University of Southern California Dissertations and Theses
Situated experiences: a qualitative study of day-to-day life and participation of adolescents and young adults with a spinal cord injury and their caregivers
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Situated experiences: a qualitative study of day-to-day life and participation of adolescents and young adults with a spinal cord injury and their caregivers
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A Qualitative Study of Day-to-Day Life and Participation of Adolescents and
Young Adults with a Spinal Cord Injury and their Caregivers
By Carol Haywood
A Dissertation Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
May 11, 2018
It is impossible to accurately trace the path of knowledge and beliefs that culminated in
this work, but I am deeply grateful to all who have shared in- and contributed to this journey.
Specifically, I want to first thank the individuals who chose to participate in this research. You
opened your lives to me, a complete stranger, and you taught me more than I can yet put into
words. Thank you for trusting me with your stories. I am forever grateful for your honesty and
vulnerability in the research process.
Also, I want to thank my Advisor and Dissertation Committee Chair, Mary Lawlor, for
your support throughout my time in the program as you encouraged me to think deeply and to
find a voice. And to the other members of my Dissertation Committee: Beth Pyatak, Natalie
Leland, and Ben Henwood – thank you for your leadership and generosity. Over the past several
years, you have each given me a unique space to explore. I have been inspired by the ways in
which you express your interests to make an impact.
In addition, I am profoundly grateful for the community of family and friends, who have
patiently and enthusiastically supported me in this process, especially:
Benjamin Glenn – for choosing to share this adventure, patiently listening and
encouraging as I work out ideas, humbly supporting me, giving me space to stumble,
helping me find perspective, and taking chances in support of my passions.
Liz, Alicia, Theresa, Margaret, and Anna – for the powerful ways you inspire and love
me. Your genuine beliefs and passionate cheers give me energy.
Bill and Wahneta – for showing me ways to find joy in work and to live true to self. Time
and again, you have demonstrated the power of curiosity paired with faith, an open mind,
and willingness to act.
And to Christine Urish, Florence Clark, “my” PhD cohort, Jennifer Bashar, Jesus Diaz, the
Graces, and so many friends and colleagues, who I haven't listed by name, but who I feel shaping
and supporting my work. Thank you for allowing me to think "out loud" and "sideways," for
offering beautiful distractions, and for being part of my own developmental process.
Table of Contents
ACKNOWLEDGEMENTS ........................................................................................................................ 2
TABLE OF CONTENTS ............................................................................................................................ 3
CHAPTER 1: RESEARCH BACKGROUND .......................................................................................... 8
UNDERSTANDING EFFECTS OF SPINAL CORD INJURY ............................................................................... 8
Biomedical lens. .................................................................................................................................... 8
Caregiver involvement. ....................................................................................................................... 11
Lived experiences. ............................................................................................................................... 14
Adolescents and young adults. ............................................................................................................ 19
CHAPTER 2: CONCEPTUAL FRAMEWORK .................................................................................... 26
DEFINING PRINCIPAL TERMS ................................................................................................................... 26
PARTICIPATION AND HEALTH.................................................................................................................. 27
PARTICIPATION AND DEVELOPMENT ...................................................................................................... 28
Doing, being, becoming, and belonging. ............................................................................................ 29
Learning and development. ................................................................................................................. 30
Life course development...................................................................................................................... 31
Transactional model of development. ................................................................................................. 32
Complementary frameworks. .............................................................................................................. 33
Disrupted participation. ...................................................................................................................... 33
Understanding possibilities................................................................................................................. 34
MEDIATORS OF PARTICIPATION .............................................................................................................. 35
Negotiations with caregivers. ............................................................................................................. 37
Technology. ......................................................................................................................................... 41
BUILDING EVIDENCE FOR DEVELOPMENTALLY-SENSITIVE INTERVENTIONS ........................................ 43
CONCEPTUAL FRAMEWORK .................................................................................................................... 44
Researcher stance. .............................................................................................................................. 44
Searching for explanations. ................................................................................................................ 45
Research experience. .......................................................................................................................... 50
Expertise and voice. ............................................................................................................................ 53
Theoretical assumptions. .................................................................................................................... 54
CHAPTER 3: STUDY DESIGN AND METHODS ............................................................................... 58
RESEARCH OBJECTIVE ............................................................................................................................. 58
METHODOLOGY ....................................................................................................................................... 59
PROCEDURES ........................................................................................................................................... 60
Recruitment. ........................................................................................................................................ 60
Participant selection and informed consent........................................................................................ 62
Data collection. ................................................................................................................................... 63
Sources of data. ................................................................................................................................... 65
Data analysis....................................................................................................................................... 72
Reflexivity. ........................................................................................................................................... 75
Project management. .......................................................................................................................... 82
LIMITATIONS OF STUDY .......................................................................................................................... 83
FINANCIAL DISCLOSURES AND PARTICIPANT COMPENSATION .............................................................. 85
Stipends for participation.................................................................................................................... 86
ETHICAL CONSIDERATIONS ..................................................................................................................... 86
OUTLINE OF RESULTS .............................................................................................................................. 86
Participants. ........................................................................................................................................ 86
Findings. ............................................................................................................................................. 87
Implications. ........................................................................................................................................ 92
CHAPTER 4: EMBODIED EXPERIENCES ......................................................................................... 95
KNOWLEDGE FROM THE BODY ................................................................................................................ 96
SPINAL CORD INJURIES............................................................................................................................ 96
ADOLESCENCE AND YOUNG ADULTHOOD .............................................................................................. 97
RESEARCH DESIGN AND METHODS ....................................................................................................... 100
Recruitment and sampling. ............................................................................................................... 100
Data collection and analysis. ............................................................................................................ 101
RESULTS ................................................................................................................................................ 102
Description of the sample and data corpus. ..................................................................................... 102
ANALYTIC FINDINGS ............................................................................................................................. 105
Changed bodies, changed selves – Lessons from the body. .............................................................. 105
Emotional consequences of losing power. ........................................................................................ 109
Same, but different. ........................................................................................................................... 112
In between. ........................................................................................................................................ 117
Rehabilitation. ................................................................................................................................... 119
Participation as a means of remaking the self. ................................................................................. 121
New activities, new worlds. ............................................................................................................... 123
Social implications of changed bodies. ............................................................................................. 126
Limitations of trusting the body. ....................................................................................................... 128
DISCUSSION ........................................................................................................................................... 129
Limitations. ....................................................................................................................................... 133
Conclusion. ....................................................................................................................................... 133
CHAPTER 5: MULTIPLE PERSPECTIVES ...................................................................................... 134
SIGNIFICANCE OF EXPERIENCES ............................................................................................................ 134
CAREGIVING EXEMPLAR ....................................................................................................................... 138
Research design and methods. .......................................................................................................... 138
Caregiving practices. ........................................................................................................................ 140
Within-case examples. ....................................................................................................................... 144
DISCUSSION ........................................................................................................................................... 150
Challenges and recommendations. ................................................................................................... 152
Conclusion. ....................................................................................................................................... 154
CHAPTER 6: PARTICIPATION .......................................................................................................... 156
INTRODUCTION ...................................................................................................................................... 156
Study design. ..................................................................................................................................... 157
Recruitment and sampling. ............................................................................................................... 158
Data collection. ................................................................................................................................. 160
Data analysis..................................................................................................................................... 161
Considerations for ethics and rigor. ................................................................................................. 162
FINDINGS ............................................................................................................................................... 163
Description of sample. ...................................................................................................................... 163
Activity and participation.................................................................................................................. 164
Participation in context. .................................................................................................................... 174
Competing rhythms. .......................................................................................................................... 178
Impacts of place. ............................................................................................................................... 193
Caregiver influence. .......................................................................................................................... 201
Escalated socialization. .................................................................................................................... 203
DISCUSSION ........................................................................................................................................... 211
Study limitations. ............................................................................................................................... 216
Conclusion. ....................................................................................................................................... 217
CHAPTER 7: RISK AND VULNERABILITY .................................................................................... 219
BODY IMAGE ......................................................................................................................................... 219
RISKS OF, AND IN, COMMUNITIES .......................................................................................................... 221
COMPOUNDED RISKS – YOUNG AND DISABLED ................................................................................... 226
DISPERSED AUTONOMY......................................................................................................................... 228
ETHICS OF NARRATIVE WORK .............................................................................................................. 230
PERSONAL VULNERABILITY AS A RESEARCHER ................................................................................... 235
REFERENCES ........................................................................................................................................ 239
APPENDIX 1: NARRATIVE INTERVIEW GUIDE FOR AYAS ..................................................... 279
APPENDIX 2: NARRATIVE INTERVIEW GUIDE FOR CAREGIVERS ..................................... 281
APPENDIX 3: EXAMPLE OF A VISUAL TIMELINE ..................................................................... 282
Chapter 1: Research Background
Understanding Effects of Spinal Cord Injury
Effects of spinal cord injuries (SCIs) can be understood from varying angles – the etic
perspective, which is primarily biomedical in the case of SCI, and the emic perspective, which
incorporates the voice of personal experience (Harris, 1976). Each have value and are
complementary to one another, yet the majority of work in SCI has been dedicated to
understanding the pathophysiology of injury and recovery. Such an imbalance in knowledge may
pose a threat to the validity of rehabilitation efforts in that elements of importance to the lived
experience may be overlooked or undervalued. Therefore, the underlying objective of this
research was to focus on experiences of those living with SCI and their caregivers in order to
more deeply understand ways in which effects of SCI and related sequalae can impact
participation, and by extension, identity, development, and quality of life. Specifically, the study
concentrated on experiences of adolescents and young adults (AYAs), who make up the cohorts
most likely to acquire new injuries in the United States (National Spinal Cord Injury Statistical
There are an estimated 17,500 new cases of SCI each year in the United States (US)
(National Spinal Cord Injury Statistical Center, 2017). According to the National Spinal Cord
Injury Statistical Center (2016), approximately 80% of new cases are male, and over 60% are
non-Hispanic White, although a disproportionate amount of injuries (22%) are among non-
Hispanic Blacks (National Spinal Cord Injury Statistical Center, 2017). The average lifespan for
someone with a SCI varies, depending on personal factors including age at time of injury, level
of injury, comorbidities, and also environmental factors (National Spinal Cord Injury Statistical
Center, 2016; D. J. Strauss, DeVivo, Paculdo, & Shavelle, 2006). Early survival rates have
improved significantly over the last 30 years (DeVivo, 2012; D. J. Strauss et al., 2006), but life
expectancies are still negatively impacted by SCI and have not improved alongside national
trends in aging (DeVivo, 2012). This is especially true for individuals with more severe injuries
and in the presence of secondary conditions (DeVivo, 2012; Krause & Saunders, 2011; National
Spinal Cord Injury Statistical Center, 2016; Shavelle, DeVivo, Brooks, Strauss, & Paculdo,
Damage to the cervical region of the spinal cord results in tetraplegia, or paralysis in all
extremities and the torso, while injuries in the thoracic, lumbar, sacral, and coccygeal regions
lead to paraplegia, indicating only the lower extremities and portions of the torso may be
affected. About 60% of new injuries in the US are of the cervical spine, and across levels of
injury, “incomplete” injuries are more common than “complete” (National Spinal Cord Injury
Statistical Center, 2016). This means that for the majority of persons with SCI, there is partial
neurological preservation below the lesion, but functional implications widely vary.
Most survivors experience chronic impairments and secondary health conditions,
including neurological dysfunctions, which can cause muscle paralysis and loss of sensation and
are associated with cardiovascular disease (National Spinal Cord Injury Statistical Center, 2016;
Saunders, Clarke, Tate, Forchheimer, & Krause, 2015). Still, over 85% of individuals with an
acquired SCI are discharged to a private residence, primarily the same homes where they lived
before their injuries (National Spinal Cord Injury Statistical Center, 2016). Effects of SCI also
have devastating impacts across the life course, such as long-term challenges to relationships and
community participation (e.g. Barclay, McDonald, & Lentin, 2015; Carpenter, Forwell,
Jongbloed, & Backman, 2007; Krause & Carter, 2009; Kreuter, 2000; National Spinal Cord
Injury Statistical Center, 2016; Tomassen, Post, & van Asbeck, 2000).
While the average age at time of injury has increased over time from 29 years to 42,
approximately half of all new injuries occur among individuals aged 16-30 years (National
Spinal Cord Injury Statistical Center, 2016), and age at time of injury has been shown to be
significant for etiology, recovery, and long-term health status. Motor vehicle accidents, falls, and
violence are the top causes of SCIs, and among cohorts under age 30, motor vehicle accidents
and violence rank the highest, while falls are a greater risk for older cohorts (National Spinal
Cord Injury Statistical Center, 2016).
Neurological recovery after SCI is known to be better in children than adults, but young
people are faced with complicating physical challenges, such as scoliosis, when injuries occur
before puberty (Parent, Mac-Thiong, Roy-Beaudry, Sosa, & Labelle, 2011). Spinal cord injuries
have a number of effects on physical development for young survivors, including changes in
bone density and stunted growth or deformities (Osorio, Reyes, & Massagli, 2014; Parent et al.,
2011). Older adults also face significant challenges, such as decreased baseline strength and
endurance, fragile skin, and frequent comorbidities (Charlifue, Weitzenkamp, & Whiteneck,
1999; J. Jackson et al., 2010; Noreau, Proulx, Gagnon, Drolet, & Laramée, 2000; Rodakowski et
al., 2014). Personal needs and health status evolve over time, and thus age at time of injury
necessitates different approaches for medical care and psychosocial support (Augutis, Levi,
Asplund, & Berg-Kelly, 2007; Hynes, Galvin, & Howie, 2012; Lundström, Lilja, Gray, &
Spinal cord injuries also influence mental health. Individuals with SCI are at increased
risk for stress, anxiety, and depression (Craig et al., 2015; Fann et al., 2011; Hoffman,
Bombardier, Graves, Kalpakjian, & Krause, 2011; Kennedy & Rogers, 2000; Lim et al., 2017;
National Spinal Cord Injury Statistical Center, 2016; R. Williams & Murray, 2015), and studies
have found suicide rates to be 3-5 times higher among individuals with a SCI than among
individuals without a disability (Giannini et al., 2010; Soden et al., 2000). Furthermore, when
suicide rates are evaluated with two cohorts divided by age (under 39 years of age and 40 years
or older), incidence of suicide was found to be higher among individuals with a SCI in the
younger cohort (Soden et al., 2000).
While considerable time and energy is spent facilitating increased independence for SCI
survivors in rehabilitation, the reality is that many people require long-term assistance for daily
activities and must regularly work with a caregiver (National Spinal Cord Injury Statistical
Center, 2016; Post, Bloemen, & de Witte, 2005). Given long-term impacts on motor skills and
sensation, individuals with SCIs routinely work with caregivers, defined as individuals who are
responsible for providing assistance for tasks that could not be done independently (E. M. Smith,
Boucher, & Miller, 2016; Weitzenkamp, Whiteneck, & Lammertse, 2002). Most caregivers are
family members and are described as “informal,” meaning they do not have a professional status
or training associated with their caregiving role (E. M. Smith et al., 2016). Among individuals
with SCI, the concept of a “primary” caregiver is also commonly utilized, where someone is
identified to manage the majority of responsibilities or oversee all care. Given the intensity of
their involvement, SCIs also influence daily activities, as well as the long-term health and well-
being of caregivers.
Caregivers for individuals with a SCI may assist with a range of daily activities, such as
functional transfers and mobility, bladder and bowel management, hygiene, and dressing. Factors
including the severity of injury, presence of comorbidities, ages of caregivers and care recipients,
coordination of medical care, interaction of family routines, and environments of care influence
caregiving roles and responsibilities, as well as the perceived burden of care (Sales, 2003; Schulz
et al., 2009; Steinglass, Temple, Lisman, & Reiss, 1982; Talley & Crews, 2007). These factors
also influence caregiver health (Schulz & Sherwood, 2008). Along with the responsibilities
involved, the amount of time spent in caregiving roles also varies. In a study of caregivers for
individuals with paraplegia, results found that caregivers spent an average of 11.3 hours each day
supporting the individual with the SCI (Blanes, Carmagnani, & Ferreira, 2007). For individuals
with tetraplegia, the burden of care can be around the clock (Post et al., 2005).
The work of caregiving is both physically and emotionally taxing (Blanes et al., 2007),
having even been described as a “chronic stress experience” (Schulz & Sherwood, 2008, p. 23).
In spite of intense physical demands, psychological effects (measured by self-report or stress
hormone levels) have been shown to have the greatest detriment to caregivers’ well-being
(Schulz & Sherwood, 2008). Taking on new caregiver responsibilities can lead to depression,
psychological distress, impaired self-care, and poorer self-reported health of the caregiver
(Burton, Zdaniuk, Schulz, Jackson, & Hirsch, 2003; Hirst, 2005; Schulz & Sherwood, 2008).
Studies of caregivers have revealed significant challenges of providing care or assistance.
For example, caregivers report performance barriers including financial strain, environmental
inaccessibility, and difficulty problem-solving (A. Baker, Barker, Sampson, & Martin, 2017;
Chan, Lee, & Lieh-Mak, 2000; Dasch et al., 2011; Doyle et al., 2016; Dreer, Elliott, Shewchuk,
Berry, & Rivera, 2007; Gorzkowski, Kelly, Klaas, & Vogel, 2011; Kelly et al., 2011, 2012;
McGowan & Roth, 1987; Sales, 2003). There are also links between the health and coping of
individuals receiving and providing care (A. Baker et al., 2017; Blanes et al., 2007; Dasch et al.,
2011; Kelly et al., 2011, 2012; Post et al., 2005; Schulz & Beach, 1999; E. M. Smith et al., 2016;
Talley & Crews, 2007; Vonneilich, Lüdecke, & Kofahl, 2016). Caregivers for individuals with
SCI are also more likely to experience sleep disturbances, cardiac disease, and obesity (LaVela,
Landers, Etingen, Karalius, & Miskevics, 2015). Furthermore, caregivers have reported
decreased rates of social participation and employment, and they are at risk for stress, fatigue,
and isolation (Arango-Lasprilla et al., 2010; Kolakowsky-Hayner & Kishore, 1999; Shewchuk,
Richards, & Elliott, 1998; Weitzenkamp, Gerhart, Charlifue, Whiteneck, & Savic, 1997).
Perceptions of burden among caregivers for individuals with a SCI tend to be highest
when assistance is required for most activities of daily living since caregivers have little time to
rest or address their own needs (Post et al., 2005). Additionally, women have reported higher
levels of caregiver burden than men, but this may result from a number of variables, including
differences in the amount of caregiver responsibilities assumed when women are caregivers than
when roles are reversed (Post et al., 2005). Depending on the nature of the SCI, early caregiving
responsibilities may not cause negative health effects (Hoppes, 2005; Schulz & Sherwood,
2008), but disease progression and developmental changes of the individual with a SCI and his
or her caregivers precipitate changes in objective and subjective burden for caregivers (Burton et
al., 2003). Prolonged durations of caregiving have been shown to increase adverse effects on the
psychological well-being of the caregiver (Hirst, 2005). Caregivers with limited support are at
greater risk for depression and decreased life satisfaction, and they often report more caregiving
burden (Chan, 2000).
Qualitative studies of lived experiences illustrate more about how a SCI can affect one’s
life than about specific mechanisms of injury and recovery. Looking across the body of
published work in this area, there are several relevant themes.
Changed selves, changed lives.
First and foremost, responses to a SCI are varied, but effects of the injury commonly
instigate significant changes. For example, Bourke and colleagues (2015) used
phenomenological analysis to unpack interviews from individuals aged 16 years or older with a
cervical SCI; a central premise of their experiences during rehabilitation was a need to “restore”
or “reestablish” their lives and futures with their “changed physical selves” (p.5). Narratives
have also shown how a SCI can be disruptive physically (e.g. paralysis), relationally (e.g.
separation from family and work during rehabilitation), and environmentally (e.g. separation
from community); in this way, a SCI can disrupt “life biograph[ies]” (p.2). Such disruptions
were also captured by Ville (2005), who inferred that the “broken body occupie[d] the entire
field of experience” (p.332) immediately following injury. Beyond hospital settings, the
community gave new meaning to life with an acquired disability, engaging physical barriers,
social factors, and demands of self-care that can take time and energy away from other pursuits.
Work required to make sense of demands in multiple worlds is taxing for those with SCI.
Spinal cord injuries not only change the way bodies work, but also how individuals feel
about themselves and how they experience the world. Some people with a SCI have reported
never previously considering life in a wheelchair and not knowing what a SCI was before their
injuries. Voices of those with lived experiences of SCI have also underlined devastating impacts
of a SCI on a body’s functional ability. However, unlike many studies from a biomedical
vantage, where paralysis is defined by loss of strength or range of motion, those with SCI have
reported changes felt with difficulty performing routine or desired tasks that emerge in daily life.
In a study of quality of life after injury, some individuals with an acquired SCI reflected on how
they previously took their bodies “for granted” (Duggan & Dijkers, 1999). As one SCI survivor
shared, “It just never dawned on me that maybe I was paralysed…It’s like being struck by
lightning…It’s difficult to put it into words really” (Sparkes & Smith, 2003, p. 306). Similarly, a
participant from a study of individuals with chronic injuries lamented, “I was 22, a recent college
graduate, and all of a sudden I’m a T8 bilateral paraplegia, whatever the hell that is!” (Crewe,
1997, p. 32).
Function, engagement, and one’s sense of self are intimately connected (e.g. Jordan,
Berkowitz, Hannold, Velozo, & Behrman, 2013; Li & Yau, 2006). Ultimately, functional
changes associated with SCI have commonly stimulated processes of reconstructing the self after
injury. As captured in an excerpt from Lennon and colleagues (2014): [The injury led to]
“overnight becoming somebody whose main identity thing is disability” (p. 34). However, while
drastic changes to ideas of self or identity have been a prominent theme among qualitative
studies of experiences with SCI, a number of studies also provide disconfirming narratives,
where some individuals did not feel their injuries had changed them significantly (e.g. Crewe,
1997; Lennon et al., 2014).
Beyond the self, qualitative studies have demonstrated that a SCI can also affect one’s
values and redefine occupational priorities. For some, SCIs have meant a new lease on life, a
time to turn away from drugs and gangs or violence, and to slow down (Devlieger, Albrecht, &
Hertz, 2007; J. Jackson et al., 2010; Papadimitriou & Stone, 2011). Effects of injury have also
included opportunities to focus on education or try new activities (Chun & Lee, 2013; Isaksson,
Josephsson, Lexell, & Skär, 2007; Ville, 2005). The physical and emotional effects of a SCI can
cause once-familiar activities to require more energy to complete, to feel less achievable, and in
turn, to became less desirable (Devlieger et al., 2007; Duggan & Dijkers, 1999; Lundström et al.,
2015; Sparkes & Smith, 2003). For some, this may contribute to breakdowns in relationships
when, for example, a mother with a SCI focused all of her energy on recovering abilities to
participate in childcare, leaving little time to invest in her relationship with her partner (Li &
Yau, 2006). In such instances, changes in routine occupations were attributable to finite
resources and incommensurability of demands.
Relative perceptions of lived experiences.
While a SCI can change one’s life significantly, it is also experienced relative to other life
events. Perhaps contrary to common assumptions, qualitative work has revealed instances in
which a person’s SCI did not have primary importance in his or her life. In one example, a
woman featured stories of her children and family tragedies as high and low points; her SCI
seemed to occur alongside other experiences but was not central to her narrative (Crewe, 1997).
Influences of context and relativity are also recurring themes in studies of pain after injury. Pain
is a common experience after SCI; like a “constant companion” (Crewe, 1997, p.36).
Furthermore, a SCI can result from disease processes originating outside of the spinal cord (e.g.
Warnock & Tod, 2014) and thus be overshadowed by treatment of other primary conditions, like
cancer or brain injury. However, even in such cases, the loss of motor control from SCI can
compound challenges in hospital and home settings. Such findings demonstrate the benefit of
listening to stories of SCI survivors in order to understand dominant concerns, which may or
may not relate directly to the injury itself.
Loss and vulnerability.
Personal stories of those living with SCI have highlighted nuanced considerations of loss
and recovery beyond well-accepted risks for anxiety and depression in this population. Changes
in function and relationships may primarily contribute to a range of psychosocial challenges,
such as depression and apathy after injury (M. Gill, 1999; B. Smith, 2013a, 2013b; Steinglass et
al., 1982). In an autoethnography, one man equated his SCI to loss of a friend, stating that amidst
a variety of emotional responses to injury, “SCI constitutes a loss that is analogously equivalent
to the loss of a loved one – precisely because losing one’s own body is to lose an intimate
companion” (Clifton, 2014, p. 1825). Other narratives have referred to a period of “mourning”
followed by an “apprenticeship” as individuals adjust to a new body (Ville, 2005, p. 342).
Feeling like a burden to others has also been connected to depression (deRoon-Cassini, de St.
Aubin, Valvano, Hastings, & Brasel, 2013), and individuals with SCI have reported vulnerability
and diminished integrity, especially in relation to receiving assistance in daily life (Clifton, 2014;
Lundström et al., 2015). Ultimately, changes in the ways people engage in the world – with care
providers, kin communities, and broader society – contributes to feelings of loss on multiple
levels (e.g. of social status, autonomy, relationships) and seemingly has a greater impact on
mental health than characteristics of injury and function in and of themselves.
Considerations for health services for individuals with a SCI.
Interpreted alongside a biomedical framework, descriptions of lived experiences have
shown how personal experiences understood within context can guide the organization, usability,
and acceptability of rehabilitation services. Rehabilitation services differ by setting, and their
scope is influenced by health policies and sources of payment, as well as by available resources,
individual patient-provider relationships, and organizational cultures. Within the literature, there
are varying ideals described by individuals with SCIs for what services should be included in
rehabilitation and how long services should extend after injury. For some survivors,
rehabilitation is limited to a finite period of time immediately following their SCI to focus on
motor recovery. For others, rehabilitation encompasses time and energy required for adaptation
to injury and dynamic health needs continuing years after their SCI. Across the lifetime,
changing demands of the body, issues of sexuality and fertility, and secondary health conditions
(Angel, Kirkevold, & Pedersen, 2011; Devlieger et al., 2007; J. Jackson et al., 2010) call for
evolving rehabilitation efforts to learn new compensatory techniques that maximize health,
function, and participation in daily life as these constructs evolved.
Grading early participation.
Individuals who have been living with a SCI for an extended period of time have shared
ways in which early experiences after injuries impacted their development of competence and
confidence, including examples when receiving too much assistance made individuals with SCI
feel helpless (Suarez, Levi, & Bullington, 2013), when a lack of acute care coordination and
education led frustration and being overwhelmed with personal responsibility (Isaksson &
Prellwitz, 2010), or when opportunities to continue meaningful activities from life before injury
promoted positive adjustment afterwards (Hawkins, Coffee, & Soundy, 2014). Such work
emphasizes the importance of facilitating a “just right challenge” (Yerxa et al., 1990) for
individuals with SCI; health care providers play a significant role in cultivating and grading
activities for participation, which go on to influence individual understandings of injury and
involvement in recovery.
Significance of secondary health conditions.
Primary and secondary health conditions associated with a SCI require life-long
management. For example, individuals must maintain consistent practice with stretching,
strength training, and weight bearing exercises to preserve bone density and maximize physical
functions. Complications of SCI beyond paralysis, such as hypotension, spasticity, and pain,
along with secondary health conditions, like pressure ulcers, urinary tract infections, and
pneumonia, also present complex challenges, and they are common sources of stress and
frustration (Angel, Kirkevold, & Pedersen, 2009; Guilcher et al., 2013; J. Jackson et al., 2010;
Jordan et al., 2013; Lundström et al., 2015; Noreau et al., 2000). Individuals with a SCI and their
caregivers must always attend to the ways in which daily activities and routines interact with
their health and overall well-being.
Research on life in the community with a SCI was done by J. Jackson and colleagues
(2010) to understand circumstances that contributed to pressure ulcer development. Findings
indicated that mediators of risk were highly individualized, but predominant themes included the
“perpetual danger” (p.569) of pressure ulcers and the extent to which lifestyles mattered in
maintaining health. There are broad implications of a SCI, including threats of secondary health
conditions. The multitude of secondary conditions relating to SCI and evidence from studies like
these suggests ways in which individuals with SCI have to be constantly vigilant of threats to
Adolescents and young adults.
Adolescence and young adulthood is a particularly important period of life because
young people are individuating from their caregivers to generate an autonomous identity through
peer relationships and exploration of vocational goals (Arnett, 2000). Individuals progressing
through these life periods are sometimes referred to as “transitional aged youth” (Wilens &
Rosenbaum, 2013) since they are experiencing such significant role changes. According to
Unruh (2004), “Much of development and maturation during adolescence and early adulthood is
about constructing an occupational identity based on achieving meaningful work” (p. 293).
Typical markers of adulthood, like completing school, attaining professional work roles, and
establishing intimate relationships, are experienced during this time. Increased independence and
mastery of skills are said to be essential, and children develop independence by making decisions
“on their own” (Phelan & Kinsella, 2014, p. 348). Therefore, a change in function after injury
should be carefully considered with respect to how it may impact these opportunities.
Given the range of effects of SCIs and related sequalae on individual experiences and
needs, no studies can truly represent a general population of individuals living with a SCI since
there is great heterogeneity. However, there are a number of significant, interrelated themes in
existing literature that inform our understanding of these injuries, including that effects of injury
impact personal identities, caregivers play significant roles in life after injury, survivors of SCI
have diverse and extensive health and rehabilitation needs, and rehabilitation services have the
potential to make lasting impacts on individual lives. Nevertheless, these themes have not been
sufficiently examined specific to lived experiences for AYAs.
Adolescence is understood to be a period in the second decade of life (Arnett, 2000)
when people experience many transitions, such as changes in relationships, personal
responsibilities, and education or work roles. This age range holds normative experiences of
living with parents or guardians, attending secondary school, exploring vocational opportunities
and job responsibilities, pursuing romantic interests, and directing increased time and attention
towards peer groups with the eventual goal of moving away from parental oversight (Arnett,
2000; Erikson, 1964b; Evans, 1995). Adolescence is a time of preparation for independent roles
of personal and professional interest (Arnett, 2000; Erikson, 1964b; Evans, 1995). At this phase
in development, mastery of daily activities for self-care and social pursuits builds confidence for
occupational exploration (Phelan & Kinsella, 2014). Puberty also occurs during adolescence. It is
marked by hormonal swings, as well as neurological changes including maturation of the
prefrontal cortex, which is important for high-level cognitive functions, such as planning and
organization (Eiland & Romeo, 2013).
A review of literature focusing on children and adolescents with a SCI indicates that a
sudden injury can impact a survivor’s mental health, identity, and outlook for the future (e.g.
Bloom & Joseph, 2003; Chevalier, Kelly, & Jones, 2015; Cook, 1985; Mulcahey, 1992;
Mulcahey et al., 2010; Putzke, Richards, & Dowler, 2000). These features of experience are
deeply related to changes in abilities and participation, and therefore, psychosocial experiences
cannot be discussed in isolation of functional implications. For example, Mulcahey (1992)
conducted a qualitative study of adolescents between the ages of 15-18 years with an acquired
SCI, who had returned to their premorbid schools after injury. Stories about shifting relationships
as a result of changed bodies and functions dominated individual narratives. Participants also
reflected on altered roles and activities after their injuries, such as in cases where adolescents
were no longer able to play in band or school athletics. These various factors, in addition to
qualities of the injuries themselves, caused changes in the adolescents’ self-images and produced
feelings of fear and anger, as well as loss of control. Mulcahey (1992) summarized, “The process
of independence [for transition to adulthood] is abruptly reversed as a result of a spinal cord
injury. The need for physical care, financial support, and assistance in mobility and self-care
infantilizes adolescents” (p.307).
A later study by Mulcahey and colleagues (Mulcahey et al., 2010) focused on the lived
experiences of children and adolescents (aged 7-18 years) with a SCI. Findings revealed that
many children and their caregivers were apprehensive about accessibility and participation.
Individuals reported anxiety or reluctance to participate in extracurricular activities when their
participation would be different from peers (e.g. in a wheelchair). Children in the study also
stated that changes in demands of self-management, such as needing to use a catheter to empty
the bladder, got in the way of social participation with peers. As a result, the children and
adolescents felt like they were “missing out” (p.609) on typical, and often desired, childhood
experiences. Additional barriers to social experiences included trouble with transportation and
inaccessibility of friends’ homes. Furthermore, children in the study reported a decrease or loss
of autonomy when parents or caregivers heavily directed everyday decisions and schedules after
acquisition of injury.
Missed or delayed experiences typically associated with supporting development come to
light as a primary concern for AYAs with a SCI. There is a unique vulnerability for adolescents
with an SCI who are working towards independence and separation from their guardians when
their plans are derailed by acquired disability (Bloom & Joseph, 2003). Further substantiating
this, Cook (1985) stated, “usual attempts at independence, decision-making, and socializing that
are such a necessary part of the transition into adulthood are thwarted by [spinal cord injury]”
In addition to gaining feelings of autonomy, adolescence is an important time to develop
and refine skills to support independent lifestyles in adulthood. Considering participation in
activities for development of work skills, one study compared experiences of adolescents with a
SCI to healthy, same-aged peers, and found that adolescents with a SCI had little experience with
work responsibilities or chores (C. J. Anderson & Vogel, 2000b). In fact, some families have
even reported a decrease in expectations for their child with a SCI (Mulcahey et al., 2010). A
lack of experience in these areas of responsibility at home and in the community can impact
readiness for work and other transitions to adulthood (C. J. Anderson & Vogel, 2000a).
Within the literature, it should be noted that the nature and severity of disability
associated with a SCI can perpetuate a survivor’s disorientation within their own bodily
experiences. Depending on the level of the SCI, individuals can experience sensory loss and
paralysis of muscles used for breathing or controlling movement in the arms, chest, legs, and
perineum. Impairments sometimes resolve, but often, they persist throughout the lifespan, and
changes to muscle tone and body functions can negatively influence self-image and self-
confidence (Bailey, Gammage, van Ingen, & Ditor, 2016). Relationships with the body are
important to consider in a developmental framework since changes to the body and constrained
interactions between the body and environment are likely to limit knowledge of personal
capabilities and body features, particularly during adolescent growth and development (Lawlor
& Elliot, 2012).
Explorations of sex and sexuality pose additional challenges for adolescents with a SCI.
Bloom and Joseph (2003) reviewed the case of a 17-year-old male whose family faced conflict
over whether his girlfriend or his mother should assist with his bathing and toileting when he
returned home after acquiring a SCI. His sexual experiences, which were private before his
injury, suddenly became a point of discussion between family members and his girlfriend after
he was injured and required personal assistance. His need for a caregiver changed how he was
able to explore romantic or intimate relationships, and it led to significant tension that ultimately
divided his family.
Looking at quality of life, Putzke and colleagues (2000) studied indicators for AYAs with
a SCI using a cross-sectional analysis of quality of life and functional measures. Participants
were divided into groups by age (18-22 years and 23-27 years) and also by time since injury (1-2
years and 5 or more). Across groups, individuals with a longer duration of injury reported the
highest quality of life. Additionally, the older group (aged 23-27 years) with only 1-2 years since
injury was found to have the lowest quality of life. Although the sample was too small for a
thorough evaluation of mediating factors, the group with the longest experience of SCI was
thought to have felt better as a result of having more time to adjust to their injuries, while the
older group with only 1-2 years of injury experiences had decreased time for adjustment.
Furthermore, when comparing the 18-22 year-old group to the 23-27 year-old group, the younger
participants reported more interactions with friends, regardless of time since injury. This may be
related to opportunities afforded by returning to school after injury, which was not as typical
among older participants.
Effects of SCI can be understood from many angles. Biomedical research sheds light on
neurological functions to illustrate impacts of damage to the spinal cord that can be measured
from cellular to population-levels. Lived experiences, and specifically qualitative work to
capture voices of those with SCI, reveal ways that physical challenges are felt and take impact.
In other words, they provide context to interpret objective measures.
Research to date, although thin relative to the population, substantiates significant
developmental concerns related to experiencing a SCI in adolescence or young adulthood. A SCI
can negatively impact independence in many activities of daily life and has been associated with
less time spent in normative experiences for these periods of life, such as school, leisure, work or
chores (C. J. Anderson & Vogel, 2000a; Mulcahey et al., 2010). As a result, SCIs are also likely
to affect individuation from parents or guardians, development of skills for adult roles, and
general quality of life among AYAs. However, longitudinal studies to demonstrate impacts on
developmental processes have not been done, and little is known about the significance of day-
to-day experiences. Furthermore, existing literature has largely focused on individual
experiences of those with SCI or their caregivers and has missed influences of interpersonal
dynamics on day-to-day life. Therefore, this research is designed to illustrate experiences of
participation as they are individually felt and described by AYAs with a SCI and their caregivers.
Experiences of acquiring a SCI in adolescence or young adulthood may be uniquely
difficult, and daily life after injury warrants close investigation to understand how the effects of a
SCI influence identity, relationships, roles and overall psychosocial development. AYAs are
processing social experiences for identity formation (Sokol, 2009) and forging new relationships
outside of parents and family; such endeavors can be disrupted by demands of adjusting to a new
sense of physical self after SCI. Age at time of injury, and also time since injury, may relate to
quality of life among AYAs with a SCI (Putzke et al., 2000), but little has been done to
investigate such predictors and possible mediators of experiences from an emic perspective.
Furthermore, within work to understand lived experiences, interpersonal dynamics among AYAs
and caregivers have been neglected as they pertain to action and experience.
Chapter 2: Conceptual Framework
The breadth of this research necessitates integration of several bodies of literature that
relate, but are not specific to, aforementioned effects of SCI. Chiefly, aspects of participation and
development will be reviewed – how it is understood, why it matters, and what influences both
opportunities and experiences. Following an outline of theoretical influences, my own
background as a researcher will be discussed as it informed the conceptual framework and
Defining Principal Terms
Given the emphasis of this study on daily life and participation, it is critical to review
how participation and engagement have been focal points in occupational science and
occupational therapy to date. Such work also necessarily integrates additional influence from
other disciplinary fields, including neuroscience, psychology, sociology, disability studies, and
anthropology. With this breadth of influence, it is worthwhile to review principal terms as they
were understood and operationalized. Constructs of participation and engagement differ but are
symbiotically related, and as such, the terms are often used interchangeably. Participation is
commonly-used in everyday language, and people have great tacit knowledge about its meaning
from their own personal experiences. One can know what it feels to participate in something and
also know feelings of exclusion or withdrawal from participation, but the essence of participation
is broad and relatively general. In the design of this study, participation is used to widely
encompass many aspects of life and living, being, and also belonging, which begins with
engagement. By definition, participation is being involved in something or joining others, and
similarly, engagement is also to be involved in activity, specifically in a way that holds attention.
Examining participation can thus reveal times of engagement and ways such experiences connect
to other dimensions of experience (e.g. health, development, hope).
Occupations are the implicit subject of participation and engagement; each occurs in the
context of an occupation or activity, defined as things towards a particular purpose, or that
consume time. Occupation, within the disciplines of occupational therapy and occupational
science, is meant to describe the activities that occupy time, have purpose, and offer meaning
(Clark et al., 1991). In the Occupational Therapy Practice Framework (American Journal of
Occupational Therapy, 2014), occupation “refers to the daily life activities in which people
engage” (p.S6). Regardless of whether activities occur in isolation or with company, to
participate or be engaged in an activity requires action, and this action is social in the context of
normative references for behavior across social and historical frameworks (Bruner, 1990a;
Lawlor, 2009; Wenger, 1998).
Participation and Health
Experiences of participation are largely subjective. Given this diversity of experiences
and responses to participation, there are a number of ways to organize the activities in which
people participate. The Occupational Therapy Practice Framework (American Journal of
Occupational Therapy, 2014) uses functional labels like self-care (personal activities of daily
living), play, work, and leisure. Occupations can also be sorted by their meaning to the actor(s),
like “doing” and “being” (Hammell, 2004; Wilcock, 1998), and there are interests in organizing
occupations by personal experiences in the act of doing, like “relaxing,” “engaging,” or “time-
killing” (Jonsson, 2014). In spite of these fundamental differences in categorizations,
occupations encompass action and experience, and through experience, individuals are impacted
and also impactful.
Participation has been linked to a number of generative aspects of living, including
learning and development (e.g. Lave & Wenger, 1991; Vygotsky, 1978), quality of life (e.g.
Blank, Harries, & Reynolds, 2015; Kielhofner, 2009), and concepts of hope or possibility (e.g.
Mattingly, 2010, 2014). However, participation is not always positively correlated with health
and well-being (J. Jackson et al., 2010; Wilcock, 2007). Specifically for individuals with SCIs,
participation must be examined, at least in part, in relation to its impact on health and self-
management routines. There are difficult “lifestyle trade-offs” to consider, such as when
spending more time in activity hinders or disrupts self-management routines (J. Jackson et al.,
2010). Likewise, sedentary routines can also negatively impact health (Guilcher et al., 2013).
Hammel and colleagues (2008) describe this as part of a “push-pull” interaction influenced by
dynamic relationships among a person, the environment, and demands and desires of
participation. Individuals with a SCI must carefully manage these multifaceted decisions for
participation throughout their lives.
Participation will be further discussed here with particular attention to the theories
connecting it to learning, development, and motivating action. Additionally, some known
influences on both opportunities for- and experiences of participation will be discussed,
including negotiations with caregivers, impacts of stigma, and use of technology. These concepts
are thought to significantly influence the current research questions and design.
Participation and Development
Individuals are born into a dynamic world, where political stages are set among historical
arcs of influence, and circumstances evolve over time in response to actors and social influences.
As people grow older, their learning is supported through exposure and participation with others,
and their lives are impacted by changing communities and environments, as well as collective
impacts of experience (Elder, 1998; Padgett, Smith, Henwood, & Tiderington, 2012; Zeanah,
Identity construction begins in childhood (Erikson, 1964b; Evans, 1995) through action
under social, cultural, political, technological, and environmental influences (Bruner, 1990a;
Elder, 1998; Lawlor, 2003b; Nelson, Fox, & Zeanah, 2014; Phelan & Kinsella, 2014; Rutter,
2007), and it continues to develop and be impacted by experiences across time. Thus,
development is a fluid and cumulative process beginning in childhood and progressing
throughout life, with significant transitions marked by differences in childhood and adult
responsibilities and capacities.
Given the complexity of developmental processes, several distinct and complementary
theories of development were considered in the framing of the study and over the course of data
analysis. They primarily informed ways to understand participation in the context of
development and to unpack ways in which experiences of participation are often deeply situated
within dynamics of social, physical, and biological worlds.
Doing, being, becoming, and belonging.
Participation, or involvement in an activity (Hammell, 2014; Law, 2002; World Health
Organization, 2011), is known to contribute to the development of skills, the generation of a
social network, and also to give meaning to life (Nakamura, 2001; Wilcock, 1998). Over a
lifetime, individuals are exposed to different activities from which they can learn, develop
preferences, and feel a sense of belonging (Hammell, 2014). However, individuals with
disabilities are known to participate in fewer activities outside of the home and with less
intensity than their able-bodied peers (Law et al., 1999; Pentland & McColl, 1999). This is the
result of compounding barriers, including physical obstacles, economic disparities, cognitive
deficits, transportation limitations, regulatory environments, and stigma (Connors & Stalker,
2007; C. Gill, 2001; Law et al., 1999; Mihaylov, Jarvis, Colver, & Beresford, 2004; G. Williams,
2001). With a focus on life after a SCI for young people, this research will evaluate an oft-cited
phrase in the field used to capture the value of participating in occupations: “doing, being,
becoming, and belonging” (Hammell, 2014; Hitch, Pépin, & Stagnitti, 2014a, 2014b; Wilcock,
1998), and it will consider whether (and how) AYAs with a SCI have found alternative routes to
participation in light of changed abilities (e.g. use of technology, modified productive roles), or if
their participation is diminished in ways that may have long-standing effects.
Learning and development.
Participation is a necessary experience for learning about one’s self and the surrounding
world. Individual actors learn through an overlapping and graded construct of skill development,
or “scaffolding” (Wood, Bruner, & Ross, 1976). This social learning theory relies on an
individual with greater skills or knowledge in a particular area to support and facilitate
performance for a less-abled individual, and the phenomenon is pervasive in everyday life.
Individuals learn by doing and being challenged (and also supported) to master new skills. Zones
of proximal development (Vygotsky, 1978) thus refer to spaces (or distance) between the skills
or abilities of the learner and the skills of the mentor, and they are significant for understanding
how learning is exchanged through doing with others.
Situated learning (Lave & Wenger, 1991) is a way of being in the world as an actor
influenced by, and also affecting, the world around us. Building on Vygotskyian theories of
social learning (1978), Lave and Wenger (1991) describe the ways in which people are
positioned (or position themselves) in communities from which they learn and eventually come
to affect by their own interpretations and actions. Learning through participation is more than
observing, “it concerns the whole person acting in the world” (Lave & Wenger, 1991, p. 49).
And yet, it is not just learning by doing; it is learning by being situated in a community of doing.
Individuals are simultaneously involved in multiple social worlds without knowledge of
distinctions or discrepancies among communities (A. L. Strauss, 2011). Each social practice
sphere uniquely affects individual participants, and each person then brings that influence into
other social worlds. In this way, sources of belonging are important because they affect people’s
knowledge, their spheres of impact, and perceptions of possibility; it is through participation that
people connect with others to live and learn in the world.
These theories of development demonstrate ways in which participation is essential to
being and learning in the world. This is a central consideration within this research since
individuals with disabilities have fewer opportunities for participation (World Health
Organization, 2011), and individuals with SCIs spend more time in activities of daily living and
health management than their able-bodied peers (Pentland, Harvey, Smith, & Walker, 1999). If
AYAs with SCI have fewer experiences of participation, how might their learning and
development be impacted?
Life course development.
In further consideration of development, four key principles were drawn from the life
course perspective (Elder, 1998) to inform the research design and analysis:
1. Historical Time and Place – Individual lives are shaped by historical and environmental
2. Timing – Life experiences are sensitive to the timing and order of transitions or events;
3. Linked Lives – “Lives are lived interdependently” (p.4) with social influences shared
across social networks and relationships;
4. Human Agency – Individuals exercise agency to influence their own life course within
the constraints and affordances of their sociocultural worlds.
Elder spoke to the sensitivity of timing for events as they occur across the life course. Life
experiences build upon one another, and as one moves throughout his or her life, accumulating
factors impact experiences, actions, and development. Individuals who share experiences – in the
overlap of space, time, or even across-generations – influence one another, and this indicates
great significance of caregivers, who are deeply involved in life after SCI. Furthermore, in the
examination of action, there must be attention to opportunities as they are influenced by social
and physical environments, including caregivers but extending to peer networks, community
settings, and even political climates.
Transactional model of development.
Building on Elder’s life course theory, I employed Sameroff’s model for transactional
development (Sameroff, 1975) to consider processes of change in context, especially those which
are mediated within care dyads. Whereas early developmental theorists ascribed a direction of
influence from parent to child, the transactional model was developed to illustrate the
bidirectional nature of development where parent and child influence one another, and in turn,
influence the environments within which subsequent actions and experiences are organized
(Sameroff, 2009a). As an analytic tool, the model focuses on particular moments or experiences
while assuming they occur in dynamic, complex, and overlapping processes; features of the
environment impact the person, while simultaneously, the person impacts the environment, and
ultimately, subsequent states of the environment and the person are impacted. The model can be
scaled to focus on micro- and macro-levels of environment, from genotype expressions to
family, peers, and culture (Sameroff, 2009a), and it sheds light on how opportunities are created
and diminished across time and experience.
Taken together, this study was designed under assumptions that participation influences
ways in which individuals understand themselves and come to be in the world. Furthermore,
through doing, people learn about their environments, and as such, features of action and the
physical and social environments where actions take place, have significance for learning and
development. At any point, certain contextual features, such as perceptions and skills of a
caregiver or the physical accessibility of a given space, can have more or less influence on
actions and experiences for AYAs, but ultimately, to understand action and participation, micro-
to macro levels of contextual influence must be considered.
Changes in function and energy after a SCI can influence the nature and intensity of
activities in which individuals participate. Sometimes individuals with SCI reappraise priorities
and engagements after their injuries (Devlieger et al., 2007; Li & Yau, 2006; Sparkes & Smith,
2003), and often, increased energy must be devoted to self-care. New functions and demands of
the body disrupt participation in activities enjoyed prior to SCI, and significant efforts are
required for SCI survivors to understand themselves and opportunities for engagement.
Accordingly, impacts of SCI are thought to activate a biographical disruption (Bury, 1982; S.
Williams, 2000), where experiences do not match existing knowledge or expectations of self or
activity. Aspects of motor control, strength, and sensation are lost, and SCI survivors are
confronted with a body that cannot perform desired or required activities in the same ways they
once knew and expected. Consequently, individuals with a SCI must obtain and organize
resources to accommodate for significant changes in function, and they experience a shift in
sense of self and identity.
Participation influences learning about one’s self and the world. Beyond this,
participation is linked to identity, a sense of meaning or purpose, belonging, and overall quality
of life (Blank et al., 2015; Christiansen, 1999, 2000; Hammell, 2004; Kielhofner, 2009;
Laliberte-Rudman, 2002; Wilcock, 1998). Highlighting relationships of activity and identity,
Kielhofner (2009) stated, “Over time, people create their own occupational identity, the
cumulative sense of who they are and wish to become as occupational beings” (p. 153).
Eventually, individuals can feel confidence and competence through their ability to sustain
engagement in activities by which they come to (or wish to) identify themselves, but the opposite
may also be true when desired engagement is not achieved.
Beginning from the moment of SCI, every experience is new or different for survivors.
Individuals are forced to re-learn about themselves and their environments through participation
in a changed body, and they must re-consider ideas for future selves when once-sacred ambitions
are no longer possible in the same way. After such a significant interruption in life experiences
and knowledge, individuals can feel lost. Extending ideas of participation to adaptation after SCI,
individuals lose their sense of self, and a new identity is constructed in everyday doing, as it is
situated in personal contexts. According to work of Phelan and Kinsella (2014) with children
with disabilities and their parents:
…many socio-cultural dimensions play a role in shaping one’s occupations and identities.
Perhaps part of who we are is what we do, and also what we don’t do, can’t do, will do,
won’t do, like to do, don’t like to do, want to do, have access to do, are allowed to do, are
forbidden to do, do now, did before, virtually do, and so on. (p.351)
Therefore, the personal, embodied experiences of doing are a primary focus in the design of this
study in order to understand how a SCI in adolescence or young adulthood has impact and also
takes shape in unfolding lives.
As moments and experiences accumulate, individuals make sense of time through a
developing storyline where they themselves are an actor (Mattingly, 2010). The anticipated or
imagined climax of their life stories is what motivates action. In this sense, narratives represent
actuality and possibility; stories are grounded in what people know and they foreshadow hopes
or anticipations. As Mattingly (2010) stated, "Stories are more than texts and do more than
reconstruct past events; they shape the meaning of the present and anticipate the future” (p. 109).
Individuals generate their living narratives from past experiences and in relation to anticipated
futures (Mattingly & Lawlor, 2000). As a result, engagement and participation affect what
people think is possible and also how they know to achieve it. Drawing from personal
experiences and knowledge of achievable action, individuals make choices to live as best as they
can within the constraints and affordances of their environments, but opportunities are influenced
by many variables.
Mediators of Participation
Participation is a vital element of life. Individuals exercise autonomy through choice in
their activities, but they are also affected by many dynamic factors, including their own self-
perceptions and socio-cultural systems or historical-political arcs (Bruner, 1990a; Laliberte-
Rudman, 2002; Lawlor & Elliot, 2012; Wozniak & Fischer, 1993). For many people with
disabilities, additional obstacles compound challenges of activity engagement, including
knowledge of possibilities, functional abilities, built environments, access to resources,
transportation, stigma, and policy (Connors & Stalker, 2007; C. Gill, 2001; Ginsburg & Rapp,
2013; Law et al., 1999; Mihaylov et al., 2004; World Health Organization, 2011).
The bioecological model of development influenced ways in which context, or
environment, were conceptualized in order to assess possible mediators of participation.
Bronfenbrenner (1977) invokes a “nested arrangement” of environments and influence,
beginning at the level of microsystems, which are people in their particular settings, defined as a
combination of “place, time, physical features, activity, participant, and role” (p.514).
Mesosystems are then the interrelations of major settings, like those among families,
communities, schools, and peer groups. Exosystems are the social structures that influence micro-
and mesosystems. For example, political systems may influence settings and interactions of
systems. Most broadly, macrosystems are then patterns, or blueprints, that formally or informally
indicate how settings or roles should generally be structured (e.g. how classrooms are typically
arranged). Different social circumstances produce unique sets of norms, expectations,
opportunities, and experiences; much like what Bruner (1990a) called “common sense.” These
tacit references can define the context within which environments and action are understood and
mediated (Elder, 1998; Elder, Modell Jr., & Parke, 1993; Frank, 2010; Holland, 2001; Mattingly,
2010; Rapp & Ginsburg, 2011).
Place or environment is known to have a significant influence on participation, and it has
been acutely felt in transitions from hospitals to homes after SCI. In rehabilitation studies, many
individuals with SCIs have described the hospital as a safe space for exploring disability, while
the community generated more discrepancies between individual abilities and environmental
demands (Clifton, 2014; Devlieger et al., 2007; Papadimitriou & Stone, 2011). Disability was
felt less in rehabilitation settings and other supportive care environments than in the harsh
realities of home and community life, where contrasts between function and demands (both
social and physical) amplified disabilities. Social and physical environments can make
individuals feel more disabled than the level or severity of their injury in and of itself, and
environments can directly impact opportunities and also interests and abilities for participation.
Among many influences on participation, the research lens largely focused on social
dimensions of experience that impacted perspectives on possibility, desire, and achievement for
individuals with SCIs. Negotiations with caregivers, effects of stigma, and also strengths and
affordances of technology use fall within this umbrella and were considered in data collection
and analysis for their perceived influence on opportunities and experiences. These themes are
taken up again in findings, although technology was only minimally referenced in participant
narratives and therefore did not indicate extensive exploration.
Negotiations with caregivers.
Communities (e.g. familial, cultural, local, national, political) impact occupations and
experiences in daily life (Dickie, Cutchin, & Humphry, 2006; Guilcher et al., 2012; Iwama,
2003; Lawlor, 2003b). Caregivers have an especially strong impact, as they come to know
intimate details about a person’s life, and they take on a primary role to facilitate participation in
meaningful activities (whether desired or requisite). Responsibilities of caring for an individual
with a disability can also affect kinship orientations, depending on organization of care and
responses of the individual’s social network (Rapp & Ginsburg, 2011). Consequently, chosen
caregivers can influence social orientations and opportunities to engage with others.
Furthermore, as previously described, the transactional model of development (Sameroff, 2009b)
was utilized at various points in the analysis to understand interpersonal dynamics in lived
experiences, including the bidirectional nature of influence AYAs and caregivers had on one
another’s opportunities and experiences.
The pervasive need for a dependable caregiver after spinal injuries has great significance
for individuals with the injury, their caregivers, and also their families and communities (Chen &
Boore, 2009; Guilcher et al., 2013; Sales, 2003). Caregivers have unique but related needs as the
individual with a SCI (Chen & Boore, 2009; Schulz et al., 2009). Therefore, needs and desires
must be balanced in day-to-day routines when participation is co-constructed. Additionally,
caregivers’ perceptions of burden can influence daily interactions and increase effects of illness
or disability on risks to physical and mental health of both caregivers and care recipients (Croog,
Burleson, Sudilovsky, & Baume, 2006). Caregivers are often family members (especially female,
including spouses and mothers (Blanes et al., 2007), but they can also be hired assistants or
unrelated members of the community. Previous research has demonstrated how caregiving roles
can be draining and also enriching (Carnevale, Alexander, Davis, Rennick, & Troini, 2006;
Green, 2007; Hoppes, 2005; Sales, 2003; Schulz & Sherwood, 2008; Steinglass et al., 1982;
Talley & Crews, 2007), but not enough attention has been given to understand the role of
caregivers in an adolescent’s life, and also how the caregiver’s relationship with the individual
with the SCI (e.g. family member, partner, peer, hired assistant) may impact experiences in daily
Effects of a SCI, including paralysis and diminished sensation, can make survivors feel as
if they have lost control in their lives. Some individuals have described ever-present challenges
of achieving and maintaining autonomy without independence, and this is compounded by
reliance on caregivers since many individuals with a SCI must broker their schedules and
activities with support of another person. As a result, regaining control or autonomy is a common
goal after injury, and it requires continuous negotiations in daily life (Clifton, 2014; Duggan &
Dijkers, 1999; Lundström et al., 2015). These challenges can be especially significant for
children and adolescents (Cook, 1985; Mulcahey, 1992), for whom autonomy is a central feature
of development. However, no known work has specifically examined causal relationships of
functional dependence and development of autonomy for AYAs with SCIs.
Evaluations of kinship communities (Rapp & Ginsburg, 2011) or mid-range social units,
defined as intimate communities encompassing more than just dyads but less than neighborhoods
or community-levels (Lawlor, Elliot, & Haywood, 2014), can inform how actions are influenced
by interactions within networks (e.g. of caregivers, families, peers, and health care providers).
According to A. L. Strauss (2011):
It is impossible to carry out a course of action of much duration or complexity without
actors interacting with each other. Actors may be intent on pursuing their own courses of
action. Both forms of interacting involve the intersection of respective actions. (p. 39)
Drawing from an appreciation of related experiences and actions, this research included
perspectives of caregivers in order to understand how their experiences and perceptions may
relate to the lives of AYAs with a SCI. Caregiver interviews were used to understand and
highlight interrelated experiences of AYAs with their immediate support providers and thus go
beyond previous conceptions of doing as an individual endeavor (Phelan & Kinsella, 2014).
Stigma has emerged in the literature as one of the most daunting tests of social
experiences for children with disabilities (C. Gill, 2001; Law et al., 1999), and according to
Phelan and Kinsella (2014), this “add[s] to the complexity of identities and occupations” (p.
349). Social participation is affected by the perceptions of others, and therefore, negative
perceptions, or stigma, can restrict opportunities and negatively influence experiences. As such,
individuals diligently attend to the ways they are seen and received by others, and they work
carefully to manage the information that others know about them (Goffman, 1963). This can be
especially true for AYAs as they move away from family units to develop peer relationships and
autonomous identities (Arnett, 2000).
Goffman (1963) developed significant theory about the way stigma develops and
manifests in people’s lives. In the harsh reality of social engagements, people are often judged by
external features. Atypical qualities can cause individuals to be discredited by others (Goffman,
1963), thus individuals with different or socially-defined discreditable characteristics must
constantly decide when and how to disclose their unique qualities. When and if their unique
qualities are revealed, they face tension surrounding their personal identities in all exposed
contexts. Throughout the lifespan, social networks and personal features fluctuate, and the
challenge of information control is renewed. The significance of stigma (feared or felt) is
prevalent among society, and individuals with disabilities experience marked struggles around
these issues of identity management. As such, Goffman’s work informed the analysis in this
research to observe how individuals feel and negotiate this pressure.
After a SCI, individuals encounter many differences from their former selves and their
peers, such as paralysis, muscle spasms, or the loss of bladder and bowel control, and they are
required to manage these differences while striving to participate in desired social worlds. Time
spent doing “socially valued” occupations matters in the context of building peer relationships
and feeling accepted within greater society (Phelan & Kinsella, 2009, 2014). In this way, public
and private lives influence engagement in preferred activities and budgeting of time and energy
(Unruh, 2004). Individuals with a SCI and also their caregivers and families experience
challenges of information control and stigma after injury; they must advocate for acceptance and
reconstruct new or altered identities to engage in their social worlds. Theories of stigma inform
observations about social forces at play in the accessibility and acceptability of activities. This
assumption was integrated in the study to facilitate a deeper understanding of social action in the
lives of AYAs with a SCI and their caregivers from both insider and outsider perspectives
through methods of narrative interviews and observations of an activity. In this way, complex
dynamics beyond stigma, were considered, as they interacted with experiences and perceptions
of self and control in daily life.
Like social relationships, technology can be a mediator of day-to-day experiences for
AYAs with a SCI and their caregivers. After a SCI, technology can be a valuable resource
(Demers et al., 2009; Ripat & Woodgate, 2012; Verdonck, Chard, & Nolan, 2011), but it may
also have a way of segregating young SCI survivors from their peers. The extent to which
technology supports or challenges opportunities for participation has not been examined from an
emic perspective with this population, and therefore, acceptability and utility of technology in
daily life were areas of exploration in this research on participation.
Technology refers to devices or adaptations used to increase participation and autonomy
in the environment (Swinth, 2005). It can include a range of high and low-tech options, such as
wheelchairs (power or manual), adaptive equipment (e.g. a cuff placed over the hand to hold a
utensil for eating, a chair for support in the shower, or a loop of fabric used to move the legs with
upper body strength), and computers (e.g. smartphones, tablets, or brain-computer interfacing).
Technology can be an important tool for maximizing independence, making or maintaining
social connections, and experiencing pleasure, but technology is not always taken up because it
is expensive, requires extensive tailoring and training, and it can also be difficult or provoke
anxiety for individuals with limited experience, education, motor control, or resources (e.g.
Chaves et al., 2004; Jung et al., 2010; Phillips & Zhao, 1993; Van Schyndel, Furgoch, Previl, &
Martini, 2014; Verdonck, Steggles, Nolan, & Chard, 2014). For these reasons, technology is not
universally recommended or used after a SCI for survivors and their caregivers.
Even in cases when technology is a prominent resource in daily life, its use among AYAs
with a SCI may differ from able-bodied peers. A national survey on technology use called the
“Common Sense Report of Consumption” (Rideout, 2015) found that teenagers in the general
US population spend an average of nine hours per day with media. Media encompasses screen
and print mediums, and generally, its intended use is organized into three categories: educational
(e.g. completing homework), entertainment (e.g. videos and social media), and functional (e.g.
checking the weather or directions). However, the report did not include time spent with
technology on homework or in school in their figures. Reports of screen time, which teenagers
consume for an average of approximately seven hours per day, refer to activities like watching
movies, browsing the Internet, checking social media, gaming, and sending texts. These figures
illustrate that media and technology have a pervasive role in the lives of adolescents. However,
technology may take on a very different role for AYAs with a SCI who have decreased fine
motor control or who spend most of their time at home. For some, it is assumed technology takes
a more prominent role in daily life after SCI, while others are limited in their use by paralysis
and lack of availability or resources.
This study used personal narratives and participant observations to understand the
relationships of technology to experiences in daily life and perceptions of self and future. Given
the extensive use of technology among teenagers in the US, it is possible for limited access to
technology after injuries to isolate AYAs from their peers. However, it is also possible for
technology to preserve social relationships in light of challenges with transportation or
environmental barriers. There is a need for descriptive contributions in this area. Since the use of
technology varies with personal preferences and circumstances, this line of inquiry was
responsive to participant narratives but not specifically surveyed. Questions about use of
technology and personal perceptions about its strengths and affordances relating to participation
were interwoven through data collection and analysis in order to draw on tacit dimensions of
technology’s influence on experiences of participation.
Building Evidence for Developmentally-Sensitive Interventions
Occupational science has a history of exploring human development with other
sociocultural disciplines and broadening the understanding of growth from a traditional stages
approach to a continuously evolving process influenced by context (Elder, 1998; Humphry &
Wakeford, 2006; Lawlor, 2009). However, this work to understand human development has not
directly translated to age-appropriate care within occupational therapy practices. Guidance for
adolescent-specific interventions is limited, and this has led to tension within health care
practices, which appear to fall short of meeting the needs of AYAs (Betz, Lobo, Nehring, & Bui,
2013; Farre et al., 2015; Klingbeil, Baer, & Wilson, 2004; Nieuwenhuijsen, Donkervoort,
Nieuwstraten, Stam, & Roebroeck, 2009). This study contributes to a growing body of research
in occupational science and occupational therapy, which guides developmentally-sensitive
practices for clinicians working with young people (e.g. Berg, McCollum, Cho, & Jason, 2015;
Pyatak, 2011), and it contributes knowledge of lived experiences to rehabilitation practices for
AYAs with a SCI.
With goals of informing health care, results of randomized clinical trials (also referred to
as randomized controlled trials, or “RCTs”) are well accepted as gold standards of evidence
(Fuhrer, 2003). However, research hierarchies increasingly acknowledge the preceding and/or
parallel value of qualitative inquiry to examine lived experiences and to develop or test theories
within individual lives (e.g. Clark, Jackson, & Pyatak, 2014; Clark & Lawlor, 2008; Fuhrer,
2003; Tomlin & Borgetto, 2011). Qualitative work offers essential insight into the interrelated
dimensions of daily life, and it is designed to be responsive to emerging themes within data that
may be overlooked in other more rigid or reductionist methods. Thus, this study was designed
with a qualitative approach in order to complement and add to existing knowledge in biomedical
Clinical trajectories and research trajectories intersect, but also diverge in several key
areas. The points of intersection indicate ways in which the clinical gaze enhances
ethnographic work and points of divergence mark times in which the clinician must
abandon or blindfold his or her clinical gaze, or adopt a new lens, in order to allow the
ethnographic view to flourish. (Lawlor, 2003a, p. 30)
Qualitative researchers who investigate a different form of social life always bring
with them their own lenses and conceptual networks. They cannot drop them, for in this
case they would not be able to perceive, observe and describe meaningful events any
longer - confronted with chaotic, meaningless and fragmented phenomena they would
have to give up their scientific endeavor. (Kelle, 1997, p. 4.2)
Taking on qualitative work necessarily engages intersubjectivity, where one’s own
perspectives inform how she or he understands and interacts in the world. M. Jackson (1998)
called this a “paradox of human existence – that one can be in the world only if one feels that
one's own world is, in some significant sense, also the world” (p.15). Such assumptions can be
advantageous for engaging with others or crossing cultural boundaries, but without attention to
one’s own influence, intersubjectivity can also be problematic. Furthermore, paraphrasing work
of Montaigne, M. Jackson (1998) added, “there is always some aspect of oneself, however well
hidden, that corresponds, albeit obliquely, to the beliefs and behaviors one sees in others” (p. 15).
Therefore, it is critical to elaborate on my stance as a researcher in the description of the study
design and methods since my own lens informed each aspect of the research – from
conceptualization to analysis and synthesis.
Searching for explanations.
The conceptual framework, positioned in context with my own background as the
principal investigator, informed the study design and interpretative lens. I began my career as an
occupational therapist in 2009 as part of the inpatient allied health team at a prominent
rehabilitation hospital. During my first years in practice, I worked with individuals across the
lifespan, who had lost function as a result of serious injuries or illnesses, including brain injuries
(cerebral vascular accidents and traumatic), spinal cord injuries, cancer, orthopedic injuries, and
neurological conditions. After some time in general practice, I transitioned to a position on the
inpatient pediatric unit. Our team of physicians, nurses, therapists, psychologists, social workers,
and child life specialists worked with patients as young as one or two months and as old as about
25 years. Their diagnoses varied but primarily included brain injuries, cancer, cerebral palsy,
multi-traumas, and spinal cord injuries. Each patient challenged and inspired me in unique ways,
and I particularly enjoyed the collaborative and creative work that was part of rehabilitation after
spinal cord injury.
When we are close (physically or emotionally) to other people, our own “experiences
near” their lived experiences can become part of our own, even after the engagement. The
memories of what we perceived in shared moments have a way of impacting us (Hollway, 2009;
Lawlor & Mattingly, 2014), especially when we spend time in reflection. So many people
touched my life in this way in the clinical setting, and my experiences of their rehabilitation
process shaped this work.
One of the youngest people I saw with an acquired SCI was just two years old when a
drunk driver struck the car his mother was driving, and he sustained a complete, high-level
cervical injury. He was unable to breathe without support of a ventilator, and he was left with
limited head control and full paralysis from the shoulders down. Learning to play and explore in
the world with such limited motor control was a challenge, but his family was dedicated to
teaching him that there would be great possibilities ahead. I also remember many older adult
patients, whose injuries commonly resulted from a fall. Many had built lives and identities based
on the abilities of their bodies (e.g. mastering an art or work skill), and effects of SCI made it
difficult to continue participation in activities that had given their lives meaning. Aged bodies
hindered neurological recovery. Still, in some cases, life experiences cultivated a different
perspective than children.
Somewhere in between the child who had not yet realized potential, and the adults who
had felt accomplishment, were AYAs, who seemed particularly vulnerable to physical and social
challenges of disability. During strengthening exercises, conversation topics would sometimes
touch on dreams and uncertainties relating to school or relationships, and activities in the
hospital and during community outings were curated to develop skills for navigating various
physical and social environments in changed bodies. However, there were limitations to the work
that could be done in the context of inpatient care. For example, I worked with a 15-year-old,
who sustained a complete cervical injury during a motor vehicle accident. His favorite things
were physical, outdoor activities, which would need to be drastically altered from familiar
practices for participation with his level of paralysis. Over time, he started to verbalize new
interests, showing readiness to plan for the future and revealing curiosities relating to computer
work and meteorology. However, his behavior revealed a fragile sense of confidence that was
easily shattered by unfamiliar activities, physical constraints, and social stigma. He required
extensive coaching and encouragement to participate in activities within the hospital setting and
out in the community.
Across the lifespan, each person’s struggle was extraordinary in its own way – not
necessarily as a result of SCI alone, but rather ways in which the injury affected countless
dimensions of life (for SCI survivors and also their broader social networks). In the experiential
ways of coming to be an autonomous person in the world, I observed something truly unique
occurring within and around AYAs who acquired life-changing injuries. In my clinical
experiences, some young patients were navigating life on their own, whether legally as a
recognized adult, or figuratively as an individual with limited parent or family involvement.
Family often accompanied young patients in the hospital, but not always. Among the cases
where family members were present, there were times when adolescents clung to the nurturing of
loved ones, and there were other times when adolescents and their parent(s)/guardian(s) did not
see eye-to-eye; they had different goals and different ideas about who should be making
decisions, which caused tension in daily care. Regardless of circumstance, many of the AYAs
had been largely expectant of increasing independence in their lives, and as such, SCIs provoked
devastation and uncertainty. Across cases, individuals with the injury were deeply affected, as
were their caregivers and families, and in the process of rehabilitation, they had to work out
participation and develop competence together through complex negotiations of action.
Rehabilitation exists as a liminal moment in the scheme of life. Amidst significantly
changing circumstances, rehabilitation is a place to mourn losses, celebrate gains, and examine
future possibilities (Mattingly, 1998); it is a transitional phase from what once was to what will
be. Above all, rehabilitation is a time to examine personal abilities with goals and to develop
skills to minimize disparate demands of the two. Individual accounts have illustrated that the
journey of rehabilitation for individuals with a SCI extends far beyond formal markers of
inpatient care (e.g. Clifton, 2014; Devlieger et al., 2007; Lohne, 2009), yet goals within acute
settings are generally focused just far enough to facilitate a safe return home. Inpatient providers
necessarily assume the next levels of care will address subsequent needs, but all too often,
individuals and their families do not experience an effective continuum of care.
As an occupational therapist in a rehabilitation setting, I had the opportunity to intimately
share experiences with patients and families during some of their most vulnerable, uncertain
moments. To develop rapport, I worked hard to be in their shoes and focus a discerning eye on
variables for clinical reasoning, including client factors and skills, as well as personal values and
cultural practices. However, my relationship with patients and families was such that I rarely saw
patients beyond the inpatient setting. As much as I tried to understand the scope of their lives and
experiences, my lens was limited to experiences we shared. Sporadic updates from families or
the team of care providers provided a glance into life after inpatient rehabilitation. Occasionally,
former patients would even return as new patients, months or years after their initial discharge
from the hospital. The readmissions were bittersweet. It was a joy to have extended
engagements, especially in cases where admissions were prompted by a positive change in
abilities (i.e. showing new opportunities for response to intensive rehabilitation), but it was
difficult in cases where challenges at home or in the community amounted to a medical event
significant enough to require inpatient care.
Reflecting on circumstances surrounding readmissions, my gaze shifted to physical,
social, and environmental factors that influenced progress, and I began to engage with complex
questions: When given near-equivalent care in the same hospital, why did some people thrive
upon returning to their communities while others existed in a state of chaos, isolation, or even
crisis? Why did some adolescent individuals progress through normative developmental
experiences (e.g. graduation from high school, pursuit of advanced education or work, moving to
independent homes and lifestyles) after injury while others stalled in dependent circumstances?
My understanding of individual circumstances was restricted to points where my work role
intersected with patient lives, but experience and existing literature underlined the significance of
biopsychosocial factors, especially supportive communities, for long-term adaptation. Above all,
I came to recognize the complexity of rehabilitation situated in contexts, which Whyte and Hart
(2003) likened to a Russian doll; circumstances and outcomes related to layers of influence
beginning at the individual and expanding to broad social settings.
Rehabilitative care providers dedicate themselves to promoting health and maximizing
functional outcomes for individuals preparing to re-enter the community after prolonged
hospitalizations, and a number of factors, including financial incentives (Berwick, Nolan, &
Whittington, 2008; Roberts & Robinson, 2014), motivate hospital systems to support positive
long-term outcomes. However, experiences of inpatient care are bound by hospital walls and
practice standards, and preparing for community life is (practically) unachievable without
extending attention and support to the community itself. So then, how can patients and providers
alike really come to understand the ways an injury will impact life in the “real world?” Rooted
in a desire to broaden my gaze, I sought to understand processes of returning to community after
an acquired injury or illness, and I was specifically focused on the significance of participation
for AYAs with a SCI and their caregivers, including consideration of the ways experiences
before injury, in the hospital, and in the community affect daily actions and experiences. My
journey has resonance with this perspective from Lawlor (2003a):
Perhaps a motivation to study and appreciate lives as lived in sociocultural worlds has
prompted occupational therapists to leave institutional settings and participate in
community life through qualitative ethnographic projects. (p.30)
As an occupational therapist and a doctoral student in occupational science, I gained a
range of experiences related to my research questions and informing my methodological
approach. Occupational therapists are well-suited to elicit narratives from lived experiences
because of their propensity to develop strong rapport through a holistic focus on person and
activity, and patient- and family-centeredness is a core value of occupational therapy (Lawlor &
Mattingly, 2014; Mroz, Pitonyak, Fogelberg, & Leland, 2015). As a therapist working with
individuals with SCIs, I learned a great deal about ways to engage with young people by
respecting their interests, functional abilities, and perspectives, and by creating open dialogues
about experiences, needs, and desires. Now that I am immersed in worlds of research and
academia, I have gained additional experience to strengthen my ability to conduct community
based qualitative research. Namely, I work as a research assistant with Dr. Mary Lawlor
that aimed to understand the experiences of families who are managing
high-tech medical therapies (i.e. mechanical ventilation or total parenteral nutrition) for their
children at home. These invasive therapies are considered life-saving supports for children with
serious health needs, and management of the medical devices and care routines requires
extensive, advanced training for health care providers and families. This study of family
experiences focused on identifying risks and strengths for caregivers managing these advanced
medical therapies in their homes.
As a research assistant, I contributed to grant writing, applications for Institutional
Review Board approvals, project management tasks (including organization of meetings, hiring
and training transcribers, and data management), participant recruitment and enrollment, data
collection through narrative interviews with families in their homes, qualitative data analysis
(using narrative, thematic, and categorical coding), and manuscript preparation. In addition, I
was granted a series of three awards through the Patient-Centered Outcomes Research Institute’s
. As an awardee, I participated in trainings specific to patient-
engagement and grant writing, conducted extensive literature reviews to identify gaps in existing
knowledge, and interacted with patients and other stakeholders to drive meaningful research
Mary Lawlor, ScD, OTR/L, FAOTA, is a Professor and Associate Chair of Research in the University of Southern
California’s Chan Division of Occupational Science and Occupational Therapy. Her expertise is in pediatric
occupational therapy, family life, and ethnographic research to evaluate meanings of experience.
This study, “Identifying Risk Factors for Harm in Children on Invasive Home Medical Therapies,” is led by
Principal Investigator, Dr. Glenn Takata, and Co-Investigators, Drs. Mary Lawlor and Greg Placencia. Work is
funded by a grant from the Southern California Clinical and Translational Science Institute (#8L1TR000130).
Project titled, “Developing Meaningful Research for Adolescents and Young Adults with Chronic Conditions,” is a
community engagement and research planning initiative involving adolescents and young adults with chronic
conditions. Funded by PCORI Pipeline-to-Proposal Awards (Project Lead: Carol Haywood, Contract #3414629):
Tier I – May 2015-January 2016*, Tier II – May 2016-April 2017, Tier III – August 2017-July 2018.
*The Tier I Award provided partial funding for this work; see Financial Disclosures.
planning and preparations. As the Project Lead, I managed a research team and project budgets.
These research immersions have given me a deep appreciation for the challenges and affordances
of community-based research, and they demonstrate my ability to complete this work.
Together, my experiences as an occupational therapist, a research assistant, and a
doctoral candidate informed my interests and perspectives in this study. I was particularly
interested in understanding activities that “matter” most (positively or negatively) for individuals
with a SCI and their families in order to affect research and rehabilitation practices, which are
truly patient-centered, and I anticipate this research will contribute to identification and
calibration of factors in daily life that influence long-term outcomes for individuals who have
experienced a devastating injury and their kin communities.
In my present research position, I have not lost my clinician lens. Personal, professional,
and academic experiences have directed attention towards intersections of morality and health
care, which underscored this research. As an occupational therapist, I drew on my professional
knowledge to notice references to clinical conditions, functional implications, adaptive
equipment, and practices in rehabilitation during interviews and observations. As a qualitative
researcher, I was devoted to narratives, as well as unspoken aspects of experience that came to
light through research engagement. Reflexive analyses and journaling in memos or field notes
throughout this research process helped mark moments of complementarity and tension between
my gaze as an individual with my own cultural framework, a clinician with experience in SCI
rehabilitation, and a researcher with interest in affecting knowledge and practice through the
sharing of stories.
Expertise and voice.
The study was designed to use narrative and observation methods to understand how
participation in daily life activities for AYAs with a SCI and their caregivers may relate to
identity, development, and quality of life. The choice to use a predominantly narrative research
design arose from the necessity for an emic perspective in this area of inquiry and also from a
deeply held appreciation of the significance and complexity of expertise as it accumulates in
Expertise develops through participation, or experience (Lave & Wenger, 1991) across
historical social systems (Eyal, 2013). This research was designed to honor individual expertise
from lived experience and to value shared expertise that comes from interpreting narratives from
insider and outsider perspectives. Accordingly, in the research process, I considered expertise of
the emic perspective with my own expertise as an occupational therapist and researcher in order
to acknowledge the cumulative and collective generation of knowledge (Eyal, 2013). Individuals
with a SCI and the caregivers who deeply shared in day-to-day experiences cultivate unique and
valuable knowledge through their own experiences. Therefore, I elicited narratives from the
study participants in a multiphase, multi-method design, and through careful analysis, I
interpreted personal narratives by identifying aspects of individual and collective stories, hidden
within layers of context that participants themselves did not always yet see or come to tell.
Narrative methods and observations with participants were used to capture multiple perspectives
– including those of participants and researchers, across multiple temporal horizons, in multiple
contexts, from a person-centered approach.
A number of additional theoretical assumptions informed the conceptual framing and
methodological approach of this research. They are briefly outlined here with references to
corresponding bodies of work, and they will be unpacked further in the findings sections as they
relate to prominent themes.
1. Development is influenced by experiences, situated in physical and social contexts,
that interact and accumulate across a lifetime.
Life course theory and research alert us to [the] real world, a world in which lives are
lived and where people work out paths of development as best they can. It tells us how
lives are socially organized in biological and historical time, and how the resulting social
pattern affects the way we think, feel, and act. (Elder, 1998, p. 9)
2. Occupations are broadly understood to be meaningful activities that occupy one’s
time, and they take on complex significance in individual lives.
Occupation may be organized into a view of the human as a multileveled, open system
acting upon and responding to the environment over a developmental trajectory, from
birth to death. At the cultural level occupation refers to the units of organized activity
within the ongoing stream of human behavior that are named and classified by a society
according to the purposes they serve. (Yerxa, 1998, p. 366)
3. Things, be they adaptive equipment or platforms for media and technology, have
significant impacts on experiences. So much so, that the things we use may start to
become part of who we are and come to expect as natural.
Things make people just as much as people make things. (D. Miller, 2010, p. 135)
Stuff has quite a remarkable capacity for fading from view, and becoming
naturalized, taken for granted, the background or frame to our behavior. Indeed stuff
achieves its mastery of us precisely because we constantly fail to notice what it does. (D.
Miller, 2010, p. 155)
4. Everyday participation influences hope, quality of life, and development.
Participation in the everyday occupations of life is a vital part of human development and
lived experience. Through participation, we acquire skills and competencies, connect
with others and our communities, and find purpose and meaning in life. (Law, 2002, p.
Life takes on meaning in the minute-by-minute reality in which we experience
ourselves achieving the ordinary things. –Gary Kielhofner (In Braveman, Fisher, &
Suarez-Balcazar, 2010, p. 828)
5. Hope is a pervasive force, and its influence on action must be examined.
The practice of hope families are engaged in is often deeply connected to notions of
personal transformation and to the idea of life as a kind of journey that demands self-
transformation. (Mattingly, 2010, p. 73)
Our vast interests, financial and certainly emotional, in the political economy of
hope are evident in daily market reports and public discourses. (DelVecchio Good, 2007,
6. People are deeply affected by their caregivers, families, communities, and broader
social environments. This is especially true for individuals who require assistance in
From an anthropological point of view, personhood is constituted fundamentally through
kinship systems, public forms of governance, as well as a broad range of popular cultural
forms and practices. (Rapp & Ginsburg, 2011, p. 383)
7. Culture shapes the perceptions of possibility and actuality that are embedded in
All cultures have as one of their most powerful constitutive instruments a folk
psychology, a set of more or less connected, more or less normative descriptions about
how human beings “tick,” what our own and other minds are like, what one can expect
situated action to be like, what are possible modes of life, how one commits oneself to
them, and so on. (Bruner, 1990a, p. 35)
8. A moment, an experience, can become a liminal space, impacted by the acquisition
of injury or a responsive action. These moments of significance shape our lives, and
our experiences becoming a living narrative.
Lived time is uneven. There emerge certain moments, events, and encounters that, as we
commonly say, are “dramatic” or “memorable” as opposed to “routine” or “forgettable.”
Sometimes more narrative moments are likely to be remembered in stories we later tell.
(Mattingly, 2010, p. 51)
9. Objectivity is, at best, nearly impossible and extremely rare.
The stories we tell about our lives are not necessarily those lives as they were lived, but
these stories become our experience of those lives. (Frank, 2013, p. 21)
The dialogical principle here is that no one - especially the researcher - ever has
'the whole story,' whether that story is told around a campfire, or in an interview, or in a
published book. Dialogical narrative analysis participates in the ongoing work of
reassembling what never will be a whole story, because claiming wholeness would
finalize the story. (Frank, 2010, p. 103)
10. Participation can (and should) never be understood without first-hand perspectives.
[Prioritizing] the perspectives of people with disabilities can deepen the understanding of
how participation is conceptualized, experienced and valued by people with disabilities,
an understanding that can inform more authentic assessment, research and social action
change to promote participation. (Hammel et al., 2008, p. 1445)
As a collection of theoretical assumptions, these ideas shaped the research design and
implementation, and they will continue to influence the synthesis and dissemination of findings.
Chapter 3: Study Design and Methods
The purpose of this research was to examine and unpack complex experiences of
participation in daily life for adolescents and young adults with a spinal cord injury. In the
analysis, I also included an evaluation of action and experience for young people and their
caregivers, whose relationships and daily interactions were necessarily heightened as a result of
SCI. Narrative interviews and activity observations generated rich descriptions of participation
for young people with SCIs in order to deeply understand participation and the ways in which the
quality, range, and quantity of activities in daily life interacted with perceptions of identity,
development, and quality of life. A number of issues were explored with primary inquiry rooted
in the following questions:
• What is “participation” for AYAs with a SCI?
• What influences participation in daily life for AYAs with a SCI?
• How do past and present experiences of participation relate to actions in present life and
ideas about the future for young SCI survivors and their families?
By focusing in on participation, this research built on long-standing traditions and
theoretical influences from occupational science and occupational therapy. Previous work done
in the field has used qualitative methods to describe lived experiences in a variety of settings and
to understand interrelationships of social actions, health, and quality of life (e.g. J. Jackson et al.,
2010; Lawlor & Mattingly, 2014; Mattingly, 1998; Pierce, 2014). After a SCI, individuals with
the injury and their caregivers are challenged to carefully monitor and respond to chronic health
needs, regardless of what they are doing and where they are situated; such responsibilities
become enmeshed in a larger scope of interests and participation. Driven by principles of
occupational science, which focus on the meanings and purposes of what people do, who they do
it with, and how it affects their well-being (Wilcock, 2005), this study evaluated a range of
mundane and extraordinary experiences in day-to-day life for this population in order to
understand multifaceted influences on participation and also how participation influenced quality
of life and long-term aspirations for this population. Perspectives of AYAs with a SCI and their
caregivers exposed implications of current gaps in knowledge as they contribute to
contextualizing everyday experiences and identifying rehabilitative care needs for AYAs with
SCIs, as well as their caregivers.
Multiple approaches were required to understand experiences in and around participation
in daily life for AYAs with a SCI and their caregivers. This research primarily employed
methods for narrative representations of experience (individual and group interviews) and
participation (observations) in daily life with the conceptualization and execution of a
phenomenological approach (Park Lala & Kinsella, 2011). Phenomenology embraces subjective
experiences, and thus allows for a focused description of lives (or experiences) as they are; as
Stern (2010) states, phenomenology captures life “as it is lived, pre-theoretically, and pre-
reflectively” (p. 34). Perspectives gleaned through narrative and observation methods generate
thick descriptions (Geertz, 1973) for such an endeavor to describe and understand complex
experiences from individually-situated circumstances. Therefore, to facilitate an informed and
nuanced description of individual and dynamic experiences after a SCI, and to understand how
personal experiences can influence and guide future orientations, a multi-phase, multi-method
qualitative research design was selected with a predominantly narrative focus. Individual
perspectives within- and across cases, from varying circumstances, were engaged to appreciate a
range of complex experiences occurring after SCI. Data from these methods revealed unique
dimensions of these experiences, such as psychosocial responses associated with injury, changes
in functions and relationships, negotiations of participation, and involvement in rehabilitative
This research was organized into phases (Figure 1) to support a responsive investigation
into the interacting influences on (and of) participation in daily life, perceived health and
wellness, and sense of hope or possibility for AYAs with a SCI. Phase I was conducted in
conjunction with a community-engagement project
designed to promote discussion and action
around issues of importance to young people with a SCI and their families. Work in Phase II was
differentiated from the community engagement work and received independent funding from the
California Foundation for Occupational Therapy and the Society for the Study of Occupation
(See Financial Disclosures for more information).
Participants were recruited to elicit perspectives during transitions home from acute
rehabilitation and up to five years post-injury through cross-sectional sampling. Purposive
sampling strategies (Padgett, 2012; Riessman, 1993) were utilized to achieve maximum variation
of participants based on the following inclusion criteria captured by self-report:
The project was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Pipeline-to-
Proposal Award, administered on behalf of PCORI by the Colorado Foundation for Public Health and the
Environment. PCORI is a non-governmental organization, which originated in 2010 and is funded by the Affordable
Care Act. I was awarded this grant in May of 2015 to support my efforts to generate a community of stakeholders
(i.e. patients, caregivers, family, clinicians, and researchers) who are interested in affecting future research that will
directly respond to- and benefit stakeholders themselves (see Financial Disclosures and Participant Compensation
for discussion of how the grant is applied to this work).
Inclusion and exclusion criteria.
AYAs (target n=8-12):
• Between 15-22 years of age.
• Acquired SCI within the previous five years.
• Living at least part-time in Los Angeles County.
• Participated in an inpatient rehabilitation program after SCI.
• Use a wheelchair as primary mode of mobility at time of enrollment.
• Speak English or Spanish.
• Individuals were excluded if they had significant comorbidities, including cancer or a
moderate-to-severe brain injury, or if their injuries were associated with a congenital or
developmental disorder (e.g. Spina Bifida or Down Syndrome).
Primary caregivers for AYAs with a SCI (target n=8-24):
• Identified by the AYA and/or a family member to be a primary provider (physically,
emotionally, and/or financially) for the AYA with a SCI enrolled in the study (1-2
caregivers may be enrolled for each participating AYA).
• Speak English or Spanish.
Health services providers in follow-up care clinics and inpatient settings at prominent
rehabilitation hospitals in the area were asked to screen potential AYA participants for eligibility,
and I attended a weekly outpatient follow-up clinic at one site to meet with eligible participants.
Individuals were also recruited through advertising (posted flyers and brochures in hospitals and
university buildings), direct solicitation in community service organizations, and through word-
of-mouth advertising in professional networks. Caregivers were recruited directly through
interested AYA participants.
Participant selection and informed consent.
Individuals who met inclusion criteria were recruited to participate in Phase I of this
study in order to examine how a SCI impacts experiences in daily life for young people. Because
there is no “typical” case of SCI, maximum variation sampling (Padgett, 2012) strategies were
used to capture experiences from perspectives within the population representing varying ages,
races, ethnicities, socioeconomic circumstances, injury levels, and also varying times since
injury. Caregivers were recruited using nominations sampling (Padgett, 2012) from the AYA
participants in order to privilege their preferences for representation of experience.
At the point of initial contact, some individuals declined participation, often with
statements indicating they did not like to talk about their life or experiences or that they were not
interested in research. However, when individuals expressed interest and eligibility for the study,
subsequent meetings were scheduled for Informed Consent and interviews. I met with potential
participants in their homes or respective recruitment settings to discuss details of this research.
Parental permission was also obtained with assent for participants under 18 years of age,
following guidelines from Institutional Review Boards. No one declined participation at the
point of consent.
For Phase II of this research, a subset (target n=4-6) of the AYA participants from Phase
I were selected based on analysis of the initial data. These key informants (Daly et al., 2007)
were chosen to generate thick descriptions (Geertz, 1973) portraying a range of daily life
experiences after injury, and they were asked to participate in additional interviews, as well as
observations to assess participation and engagement.
For the first phase of data collection, participants were individually interviewed in their
homes or a community space. Interview guides (Appendix 1) were used to support initial
consistency of themes across interviews, but the focus of each interview was responsive to
Phase I: August 2015 – January 2016
Individual Interview (1 each)
- Elicited description of injury, rehabilitation experiences, community life,
goals (for self, within dyad, and/or among kin), and family life
Group Interviews (2 for AYAs; 2 for Caregivers)
- Discussed rehabilitation, transitions to community life, occupations, daily
experiences in and outside of the home, and social roles
Phase II: July – December 2016
AYA Interviews (2-4 each)
- Discussed time use, experiences in daily life, health, rehabilitation, sense of
identity and autonomy, and hope or possibilities; integrate visual timelines
- Planned and reflected on activity observation
Activity Observation (1-2 per AYA)
- Observed quality, features of participation for AYA
- Caregivers involved only as naturally indicated to observe choreography of
participation and dynamics of interactions
Caregiver Interviews (1-3 each)
- Discussed time use, experiences in daily life, health, rehabilitation, sense of
identity and autonomy, and hope or possibilities for self and AYA with SCI
- Reflected on activity observation (as indicated by caregiver involvement)
Figure 1 - Organization of Research
individual circumstances and perspectives as they emerged in the narrative process. Discussions
broadly focused on collecting general demographic information (age, nature of injury, time since
injury, home environment, primary occupations), and also eliciting personal perspectives related
to adaptation to injury, social participation, use of- and relationships with technology,
negotiation of roles in home and community, personal goals, family dynamics, and experiences
during rehabilitation. Interviews were audio recorded, and the audio files were transcribed
verbatim. Interview transcripts were then coded (see Data Analysis) and analyzed by hand and
using NVivo11 Software. In addition, details about the observations of AYAs and caregivers in
their homes, communities, and at rehabilitation centers were recorded in field notes to
contextualize the data analysis.
Following the individual interviews, participants were invited to participate in group
interviews with like-peers. Individuals with a SCI met with other AYAs who had a SCI, and
caregivers met with other caregivers. In total, there were two group interviews offered to each
participant (AYAs and caregivers) to promote increased comfort and sharing in a consistent
community. Each group interview was held in a convenient location, organized with input from
the participants to feel safe and accessible. They each lasted approximately two hours and were
audio recorded for transcription and analysis.
The group interviews were structured as collective narratives (Jacobs, Lawlor, &
Mattingly, 2011; Lawlor & Mattingly, 2001), where the participants shared stories about
personal experiences, sometimes expanding on individual interviews, and generated a group
narrative about life with a SCI as an AYA or caregiver. The participants themselves guided each
group with gentle facilitation to maintain orientation towards the central research questions. At
points when discussions fell quiet, participants were prompted to reflect on- and respond to
existing themes from descriptive literature of population characteristics and challenges, as well
as emerging themes from analysis of the individual (de-identified) interviews. The discussions
were carefully structured with ground rules for confidentiality and mutual respect and time
allocated to share resource-specific information with peers as desired or appropriate.
During Phase II of the study, a subset of AYA participants were selected as key
informants to generate greater detail about their lives and experiences that may impact personal
identities, developmental arcs, and orientations to future possibilities. Key informants were
chosen to represent features of diverse circumstances, as revealed through analysis of data from
Phase I. These participants completed additional individual interviews (2-4 per AYA, 1-3 per
caregiver) in their homes or a community space. AYAs also completed a visual timeline of
personal experiences and were asked to be observed participating in an activity.
Throughout the study, participants were also encouraged to contact me to report personal
updates as they desired or felt appropriate. Updates could include disruptions to daily
experiences, changes in living environments or caregivers, enrollment in school, changes in
health status, or any other information deemed relevant to study aims. Updates were voluntary,
and they came by way of email, text, or phone, based on the preferences of participants. This
communication was logged in field notes to guide analysis of narrative data.
Sources of data.
Three primary methods were used to generate data for this research: narrative interviews,
activity observations, and field notes.
Many people have written about the work of narratives and the power of stories. Stories
“give people their first system of thinking” (Frank, 2010, p. 47) from which individuals learn and
orient to communities in the world (Lave & Wenger, 1991). Stories inform personal perspectives
(Frank, 2010) and “common sense” (Bruner, 1990a), or mutual understandings and expectations,
and they illuminate characteristics of experiences (Riessman, 1993). Furthermore, stories are
situated in narratives that represent experiences and also possibilities (Mattingly, 2010).
Individuals identify themselves in a dynamic storyline, which unfolds across a lifetime, and
layers of context within and around the stories dynamically shape both the telling and
Stories are interpreted dialogically, with narratives serving as a source for generating
understanding of both possibilities and actualities. Regardless of their factual “truth,” narratives
hold significant power (Bruner, 1990a). Stories within narratives make trouble, display and
contest character, compel ideas, shape-shift, and make the unseen visible (Frank, 2010).
Narratives also enable agency, create or disrupt order, and show perspectives of the narrator
(Bruner, 1990a; Mattingly, 2010). In this way, the collection and analysis of stories within
research can reveal complex relationships among interacting worlds, such as home, community,
and health service centers.
Some stories are more powerful than others (Mattingly, 2010), and in various forms, they
can provoke liminal moments or transformations. Narratives have potential to both hurt and heal.
They lay the scaffolding for interactions (Lawlor, 2003b), and their power is most felt when they
break down (Mattingly, 2010). When individuals recognize possibilities within a storyline,
whether consciously or not, they can be agents in the unfolding story. Recognizing a possibility
within the narrative space can generate hope and action, and likewise, restrictions within
narrative spaces can generate frustration or hopelessness. An example of this can be seen in
stories where the temporal landscape is narrow and the context is restrained to only what has
been previously known and experienced; in other words, we can interpret an absence of hope in
stories where little possibility is revealed. The interaction of stories and agency is known as
“narrative emplotment,” a theory of action that was developed by Mattingly (2010) through her
observations of clinical interactions in spinal cord injury rehabilitation. Narratives are intimately
connected with action, but unlike stories, narratives do not have a beginning and end (Frank,
2010). Narratives traverse time and space, and they act in and on people (Bruner, 1990a; Frank,
2013; Mattingly, 2010). Stories capture a particular circumstance in a dynamic narrative, which
is continuously impacted by time, place, and people.
Narratives have multiple uses in occupational science with primary functions for personal
organizations of time and experience, clinical reasoning, and research (Bonsall, 2012). They are
part of a personal, therapeutic process to make sense of one’s own experiences (Frank, 2010;
Mattingly, 2010), and they are a tool for understanding context, particularities of lives lived
(Riessman, 1993), as well as orientations to possible futures (Frank, 2010, 2013; Mattingly &
Lawlor, 2000). According to Frank (2010):
People grow up being cast into stories, as actors are cast into their parts in a play – but
that is too deterministic a metaphor. People are like actors cast into multiple scripts that
are all unfinished. From all the stories that people hear while they are growing up, they
remain caught up in some, forget many others, and adapt a few to fit adult perceptions
and aspirations. (p. 7–8)
Often with a tacit orientation to story forms, individuals come to understand themselves
and their roles in the world through stories, and likewise, they use stories to imagine life
unfolding. Narratives, then, have great significance for impacting health and quality of life, and
they offer a critical, first-hand glimpse into mediators and moderators of experiences. As
Mattingly (2010) states, narratives have the “ability to offer a rich portrait from the actors’ point
of view” (p.217), and thus they are valuable for understanding the effects of circumstances, like
SCI, on a personal level. Narratives may not tell the “whole” story, but they capture important
parts of a story about personal experience and perceptions, which come to be a person’s life
experience (Frank, 2013).
Throughout the course of this study, AYAs with a SCI and their caregivers were
interviewed individually and in groups to understand interrelated experiences in rehabilitation
and during transitions home and to the community. Their narratives were used to unpack
evolving perspectives, social experiences, priorities for health services, and perceptions of
possibility after injury. This narrative research approach honors expertise from a range of lived
experiences, and the study methods maintained a responsive and also targeted design through
iterative analysis of narrative data from AYAs with a SCI and their caregivers.
Narratives were used as a lens for understanding complex interactions at play in everyday
lives of young people with a SCI and their caregivers, including personal developmental arcs
situated in social and historical circumstances. Narrative interviews, held individually and in
groups, helped to overcome known barriers to research participation for young people with a
SCI, including transportation and environmental access. Beyond pragmatic concerns, open-ended
interviews were the foundation of this research because they are an effective tool for eliciting
stories, which reveal rich details about individual lives and experiences. Through narratives,
participants share particularities of experiences and frame predominant concerns in their own
words (Mattingly & Lawlor, 2000; Riessman, 1993). Participant stories, embedded in narratives
spanning time and place, were analyzed to understand perspectives, experiences, and goals for
AYAs and their caregivers affected by SCI.
To support the narrative process and guide reflections on the relationships of experiences
over the life course, AYAs in Phase II of the study were invited to create visual timelines during
narrative interviews to represent significant moments in their lives. Prior to their first interviews,
simple timelines were created for each participant from the preliminary data, including dates of
SCI, hospitalizations, and housing transitions. Individual timelines were then shared with
respective AYA participants during each Phase II interview, and participants were invited to
review and add to their timelines with reflections on constructs of occupations, associated roles,
and contextual influences that impact their lives and overall well-being. The prompts drew from
practice approaches within the model of human occupation (Kielhofner, 2008) and person-
environment-occupation (Law et al., 1996) frameworks. Linear timeline designs were also used
to facilitate discussions of anticipated futures and their relations to past and present experiences.
Visual timelines are a strategy modified from analytic work and methods developed by
Olga Solomon at the University of Southern California
and also from visual diagramming
research, where respondents independently drew their own timelines (e.g. Bagnoli, 2009; K. F.
Jackson, 2013). The choice to instead co-construct timelines with participants during their
interviews accommodated participants whose paralysis limited writing abilities, and it allowed
Visual timeline approach developed at the University of Southern California as part of the research titled, Autism in
Urban Context: Linking Heterogeneity with Health and Service Disparities (PI: Olga Solomon, Funded by National
Institute on Mental Health, National Institute of Health, R01 MH089474).
for the interviews to primarily remain a narrative transaction. Where in previous applications
visual timelines have been a principal form of data for standalone analysis (e.g. Bagnoli, 2009;
Mazzetti & Blenkinsopp, 2012), timelines in this study were analyzed in connection with the
broader narrative and observation data. See Appendix 2 for a de-identified snapshot of one
Key informants in Phase II were also asked to be observed in an activity. The activity
was mutually-identified based on what was known from narratives about each participant’s
engagements and their personal preferences. The focal activity could be a routine task, such as
mealtime or shopping, or an extraordinary event, such as a graduation. The purpose of
participant observations was to expand on understandings of experience in daily life for AYAs
with a SCI through interpretation of embodied experiences. Observations illuminated challenges
relating to engagement for individuals with a SCI beyond interviews, and they offered additional
details about the ways in which equipment or technology were integrated in daily life for AYAs
with a SCI and their caregivers. Miller (2010) stated that the inherent capacity of material items
cannot be understood until they are "manifested in usage and meaning" (p.112). Likewise, the
value of material items and other forms of assistance may not be recognized once they are fully
assumed in experiences. Therefore, observations allowed for exploration of experiences beyond
cognizant, narrative reflections to see how environmental features, such as support of caregivers,
material objects, and technologies, made their way into daily life and facilitated or challenged
participation. Activity observations also captured vitality in experiences (Hollway, 2009; Stern,
2010), including a sense of energy, characteristics of action, and interpersonal dynamics, which
ultimately informed analysis of narrative data in consideration of the overarching goal to deeply
understand the ways in which experiences of participation in daily life may relate to identity,
development, and quality of life.
Approaches to participant observations emerge from ethnographic traditions, but they
have utility across qualitative designs to illustrate details of experiences, which may not be
otherwise shared in personal accounts. For example, Lawlor and Mattingly
used observations to
consider interacting dynamics of actors in health care encounters with African American families
with a child with special health care needs. Hanging out in health clinics and families’ homes
elicited rich understandings of the work that is often done to negotiate care within- and among
families and communities (e.g. Lawlor & Mattingly, 2014; Mattingly, 2006). Given the strengths
of immersive experiences with participants, observations in this study were documented in field
notes following each encounter, and participants were asked to reflect or debrief about the
activity in real time, as well as after the observed activity in a follow-up interview, as possible
Field notes of observations and interpretations were kept throughout recruitment, data
collection, and analysis to contextualize data, track methodological decisions, and identify
researcher assumptions (Padgett, 2012). Written records of observations capture researchers’
perceptions, and they are valuable for marking tacit or unspoken features of experiences, like
interactional qualities of an interview or activity (Padgett, 2012). Field notes are also important
Drs. Mary Lawlor and Cheryl Mattingly co-led a 15-year study using narrative phenomenology and ethnographic
traditions to unpack the complex negotiations of African American families managing the care and development of
their children with special health care needs across borders of homes, communities, and health clinics. The research,
collectively titled Boundary Crossings, began in Chicago, IL, in 1998 and was continued in Los Angeles, CA. It was
supported by several grants from the Maternal and Child Health Bureau and National Institute of Health. Many
important publications have emerged from this work, including Jacobs et al., 2011; Lawlor & Mattingly, 2001,
2014; Mattingly, 2010.
for understanding bias of gaze. Field notes from this study included my personal interpretations
from both formal and informal observations in participant homes, health services sites, and
communities. Reflections were recorded orally or by hand, and they included several attempts to
recount my lived experiences as a researcher (Hollway, 2009), perceptions related to
organizations and cultures of care, observations of the environment or context, and details of
engagement that were not otherwise recorded. Field notes also included information about
emerging ideas or themes within- and across cases, decision points during recruitment and
analysis, and memos guiding next steps in the research. Field notes were used to guide data
analysis, as well as project design and management.
Data analysis was both descriptive and interpretive. In order to distill meaningful findings
from the data, careful analysis included integration of peer audits and triangulation methods to
improve rigor. Following transcription of audio recordings from individual and group interviews,
data were narratively, thematically, and categorically coded using NVivo11 Software to reveal
and organize tacit and explicit dimensions of experiences (Padgett, 2012; Riessman, 1993).
Initial themes were identified through “chaptering,” which is a strategy developed by Drs. Cheryl
Mattingly and Mary Lawlor to draw on structural elements of narrative to explore
representations of experiences. The process of chaptering reveals not only the narrative features
of text but also the sense making, moral dimensions, and emic perspectives of meaning inherent
in narrative text, as revealed through a practice of chunking meaningful segments or “chapters”
of transcripts. I used chapters to write codes, with some relating directly to theoretical
assumptions in the conceptual framing of the study and others emerging directly from emic
perspectives or my own reflections. Categorical, thematic, and narrative codes were outlined in a
codebook. Developing and managing the codebook involved writing a list of codes with
definitions, exemplary excerpts, and shorthand references, as recommended in guidelines from
MacQueen and colleagues (MacQueen, McLellan, Kay, & Milstein, 1998) for consistency in
coding. Over time, I updated codes and definitions, sometimes even deleting codes that were not
clearly defined or used in the iterative process.
In the order of analysis, perspectives of the AYAs were usually considered first to frame
findings from their experiences. Caregiver data were then integrated to consider the impact of the
SCI on primary supporters and to evaluate interrelations of experiences among AYAs and their
caregivers. When possible, caregiver data was also analyzed to considered differences of
experience when caregivers were romantic partners versus parents. Given multiple points of
contact for interviews in individual and group settings, stories were analyzed for when they were
shared more than once to mark significance and evolution of perspectives across tellings, and
specific attention was given to continuities, along with discontinuities in narrative (Mishler,
Data from key informants offered the greatest level of details related to day-to-day
experiences in participation since those participants were engaged over the longest period of time
and had the most interactions in the research. Data from visual timelines was used to
contextualize narratives and observe situational influences on action and participation. Lastly,
observations facilitated a microethnographic analysis of experiences to supplement narrative
interviews. The observations afforded greater understandings of tacit dimensions of experiences,
including environmental and sociocultural factors influencing participation. Together, the
methods supported a robust analysis of participation and its influence for AYAs with a SCI and
Data were iteratively analyzed within- and across-cases to identify themes, which could
be tested against new data and shared for member reflection (Janesick, 1994) in subsequent
interviews. Within-case analyses compared descriptions of experiences through narrative
representations in interviews to categorical content from visual timelines and also to elements of
vitality from participant-observations. Emerging themes were analyzed for their coherence in
individual cases and across the group (Mishler, 1986), and analysis of data across cases
specifically considered elements of convergence and divergence with individual experiences.
Throughout- and following data collection and analysis, I remained in conversation with
the literature, especially around emergent and unanticipated themes, in order to manage my own
assumptions, focus my analytic gaze, and compare findings with what is known in the literature.
Outside reviewers were invited to independently analyze data using strategies of co-coding
(Padgett, 2012) to capture diverse perspectives for interpretation and to minimize bias.
Implementation of a negative case analysis and integration of participant reflections was also
used to validate findings and improve rigor (Padgett, 2012). Lastly, triangulation was applied to
strengthen the validity of this qualitative analysis from the angles of data (individual and group
interviews, observations, visual timelines), investigator (with colleagues’ participation in aspects
of coding and data interpretation), and theory (Denzin & Lincoln, 1998a, 1998b).
Reflections on my own lived experiences brought me closer to participants in a form of
what Marcus (1999) has described as “tactical humanness,” where interest and understanding in
varying experiences is generated by relating specific elements (i.e. trauma, loss, triumphs) to
one’s own life story. I drew from these perspectives to understand the stories of AYAs with a
SCI and their caregivers from personal and clinical angles. I also took on responsibilities for
interpreting and sharing their lived experiences in a way that is both valid and approachable so
that this research could have impact in theoretical and practical worlds for understanding
multiple dimensions of experience after devastating injury and their broader impacts in human
During data analysis, participation was considered with multiple forms of meaning.
Namely, analysis of participation considered the complex significance and roles of lived
experiences in personal lives for young SCI survivors and their caregivers, and it secondarily
considered the process and meaning of participation in a research community. This research was
structured, in part, to contribute ideas to the growing need for stakeholder-engaged research (i.e.
patients, caregivers, families), including understanding possibilities to fuel the construction and
dissemination of studies with lived expertise in order to generate meaningful knowledge and
desired, impactful health services (Hammel et al., 2008). Throughout this study, participants
were asked to reflect on their familiarity with research as a process or practice, what they thought
it meant to engage in research, whether they themselves knew of research evidence or use it in
their lives, and in such cases, how data did or did not represent their own experiences.
Reflexivity was intensively intertwined in this research, and therefore, it is a bit artificial
to name it as its own stage or process. However, the influence of reflexive practices on myself as
a researcher, and by extension, my engagement in the research must be acknowledged. Just as
actions are situated in- and influenced by context, so too are recollections of experience, which
take shape as sources of knowledge (Behar, 2012). Accordingly, throughout the research, I
experienced ways in which my own knowledge was deeply questioned and influenced by
immersion in this work. Each study activity was shaped by ways my perspectives impacted
facilitation of storytelling and my ability to hear what was being said.
By prioritizing emic perspectives, individual narratives guided my gaze to lived worlds
beyond SCI. I did not originally anticipate the extent to which participants would open up about
themselves, but their willingness to embrace vulnerability in storytelling provided a deeper look
into real world experiences. I was surprised by the frequency of times when I was shifted into a
reflexive space. Where I started and where I ended in the study did not directly align with initial
expectations, but reflexivity offered opportunities to better understand experiences and
perspectives of the study participants.
Time spent in the field opened my eyes to perpetual risks felt by some participants in
their everyday lives. For example, Omar was an 18-year-old who had been injured by what he
believed to be a targeted shooting. As such, he described ways in which he severed ties with
social worlds after his SCI, and he tried to hide, even while in the hospital. Some close friends
knew where he had been taken for emergent care, but he did not tell anyone when and where he
was transferred for rehabilitation. His words and actions during initial interviews, when we met
in the hospital, indicated ways in which he perceived an ongoing threat to his safety, employing
strategies such as disconnecting his cell phone and closing some social media accounts to stay
off the radar. Still, it was not until we met for subsequent interviews in his community that I
began to really understand the extent to which fear engulfed him and affected his every action.
In my field note from his first individual interview, I reflected on how I had been warned
that Omar would likely reject participating in the research, yet all of my encounters with him
were quite positive. I wondered how he had been so misjudged by his clinical team. Upon
introduction, he asked many questions about the research with interest and curiosity, and he
ultimately chose to participate, although chose not to refer a caregiver to enroll with him.
Throughout the study, he was very careful with what he wanted to say “on and off the record,”
but he was usually quite open, especially when the recorders were off.
In his first interview, Omar immediately surprised me – with his honestly, but even more
so, with his description of a reality so unlike my own. After sharing his story of being shot, he
went on to say:
I mean I grew up with it all my life. My mom stuff- she’s been in the middle of gunfights
and stuff since I was five years old. Every day. [CH: Wow] Yeah, mostly every day. I’m
not lying. Mostly every day. Just fucking gunfights. I got used to it, you know? Just I
ain’t get used to this happening to me [referring to his SCI]. I never thought this was
going to happen to me. I thought I was going to be dead, if anything.
Afterwards, in my field note, I described how difficult this had been to hear and understand:
He said he saw it every day… That is a world that I can’t even begin to wrap my mind
around. And so, these are the questions that are hard to follow up on because my mind is
spinning about this type of reality.
In this reflection, I went on to question how he might manage risk in the community, and I have
been haunted by trying to imagine gun violence in everyday life. I grew up primarily knowing
guns in the context of hunting and sport. Guns in dense urban environments, connected to gang
activity and other forms of street life are entirely different, and in the course of this research, I
was pushed to understand how participation with a SCI could be orchestrated in worlds with
such pervasive threats to personal safety.
Ongoing interactions with Omar continued to open my eyes. For his third interview, we
agreed I would meet him in his community. However, he was not ready to tell me where he
lived. Instead, he asked if we could meet in a park. The time he chose was mid-afternoon, on a
day when temperatures hovered around 95 degrees. Prior to our meeting, I wondered if we
should change to meet somewhere indoors, with protections from the elements, but ultimately, I
followed his lead, knowing he had carefully considered the arrangement.
He had not yet arrived when I got to the park, so I surveyed the environment to consider
the most accessible and comfortable areas to talk. He did not leave his home to meet me until I
called him to say I was waiting. I noticed myself tense up in response to the caution he was
taking, and in my field note, I recounted moments of feeling how different his world was than
mine. I said:
Throughout the entire interview, he was scanning everywhere. I asked him a few times if
we should move [to a different location]… He was constantly turning his head on a
swivel. A couple of times, I made note of him doing this, and he just really acted like it
was a normal thing…
When we were getting set up for the interview, I was at one of several picnic
tables in the shade right by the parking lot. When he came over, he made a comment
about hoping that no one would come around. I responded, “Should we move somewhere
more private?” and suggested an area that was a little further from the parking lot. Right
away, he wanted to move there…
When he still looked so paranoid, I asked if we should check out another area of
the park that was further from the road, [but] he immediately said no, saying it is
important to have witnesses… [I understood this to mean] he wanted to be close to the
road so that if something happened, people would see it. He also kept saying he was
looking out for my safety. My back was to the road, so I couldn’t see anything. I turned
around a few times when he looked particularly nervous, but I tried not to draw a lot of
attention to it once I knew that was going to be how the interview went. But it makes a lot
of sense to me now why he wanted to be in a public space. And the park was big enough
that we could talk without people hearing.
These types of encounters pressed me to evaluate my knowledge and relationships with my
surroundings. The neighborhood park was big, with green grass, an open field, several play lots,
picnic tables, and walking paths scattered throughout. There were a few cars in the parking lot,
with individuals and families sharing the public space, and at one point, it seemed as though a
middle school track team lapped around as part of their practice. Without the perspective Omar
brought to the interview, I judged the area to be safe and welcoming, but his assessment was
quite different, and it led me to understand that for him, feeling victim to a targeted shooting,
threat was everywhere. He was always planning for worst-case scenarios, and as he indicated in
our first interview, being disabled was something he never expected. In his mind, the likely
consequence of gang affiliation was death, and he suffered in the vulnerability he felt with his
For what turned out to be our final interview, Omar invited me to his home. I was
encouraged by this gesture, as I interpreted that I had earned his trust enough to enter his space. I
also anticipated that meeting in his home would allow him to feel more relaxed than when we
talked in the park. This was perhaps partially true, but being in his home continued to reinforce
my growing awareness of the extent to which shared spaces do not mean shared realities. My
experience in his community was very different than his own.
Reflecting again in field notes from that meeting, I extensively described his home
environment. I will omit most details to protect his anonymity, but I spent some time setting the
scene for later analysis since it was important to note characteristics of his space that were clues
for understanding his experiences. In my notes, I described entering the home:
There are metal bars on all of the windows of the home. The front door was a black
screen door made of hard metal with a lock and a storm door just inside of that. Omar
indicated the screen door did not need to be locked when I entered the home. He shut the
screen door and left the storm door open so [presumably] he could easily see outside.
However, when I was standing outside before the interview, I noticed that it was very
difficult (impossible?) for me to notice that Omar was sitting inside the door; he needed
to call out to me so I knew he was there.
To me, having a metal door with limited visibility from the outside, and Omar’s arrangement of
our interview space, which provided him a visual line to the door, illustrated strategies he
developed to be aware of his surroundings while remaining outside of view. After some
additional description of what I observed in the home arrangement, I included this note:
Next to the table (approximately 5’ from where we were sitting) was a long rifle with
[what I think was] a scope. I tried not to look at it much, but it was positioned in clear
view [leaning against the wall], and Omar must have noticed me looking at it now and
If this had been our first meeting, I imagined how I would have felt shocked and anxious about a
gun in the room. To some extent, I still did, but my acceptance of the rifle revealed ways in
which my knowledge was shifting in response to what Omar shared. In that meeting, I did not
see the rifle as a threat to me; instead, I believe it was a symbol of Omar’s fear and vulnerability,
and his desperation to protect himself, even in his own home. I reflected back on when he had
told me about guns being part of his everyday life, and I realized, while he certainly must have
known I would see it, this was part of the world he wanted me to see and understand through his
participation in the research. My field note recorded immediately after the interview included
some of these emerging reflections:
It seems Omar is getting more and more comfortable with me, but we did review the
limits of confidentiality [again] today (e.g. [my obligation to report] risk of harm to self
or others), and he couldn’t remember how or why the recorders are used. He was not
averse to the recorders, but he was screening himself as he spoke. A few times, I noticed
him glance at the recorders mid-story, pause, and either stop or change course a bit. A
couple of times (like when he was trying to think of memories), he would look at the
recorders, say never mind, and look at me with a smile. At one point, I offered to shut off
the recorders so that he could speak more freely, which he took advantage of [for a brief
while], and then later in the interview, he requested for them to be shut off again.
Omar lived in a state of perpetual fear. There were very few people he trusted in his home
and community, and while our relationship was deepening, he was still keenly aware of the
potential power (and risk) of having his stories on record. When my recorders were off, he
shared some specific memories of gang life, and he provided rich insight into ways his unique
vantage point had been shaped by social and historical influences. I still do not know what it
really means to live in his world, but I now understand how such worlds exist, and I will forever
be changed by the moments he opened his world to me.
With recognition of work from Giddens (1990), Holmes (2010) described reflexivity to
include recognition of bodies, practices, and emotions that have been “produced and changed as
people react to their circumstances in ways no longer governed by tradition” (p.140). These
experiences with Omar provide just one example of many when participants introduced me to
individual knowledge and traditions that were unique from my own. In doing so, they shifted my
gaze in the research and my beliefs and practices extending into my own everyday life. In this
research, I have come to recognize support of community participation for young people with
acquired SCI as a type of moral imperative, and my passion to work with such communities has
been fueled by greater exposure to their everyday lives and experiences.
Distribution of efforts.
As the principal investigator for this study, I was predominantly responsible for the
conceptualization and execution of the research, including applications for external funding. I
received assistance to facilitate the group interviews from Drs. Mary Lawlor and Jesus Diaz, who
then also contributed to field notes for those research encounters and were part of data
interpretation meetings. As Advisor and Dissertation Committee Chair, Dr. Mary Lawlor was
also involved as a mentor throughout the research and was deeply engaged in data analysis.
Additionally, select peers from the USC Chan Division of Occupational Science and
Occupational Therapy Peers had some involvement in coding of data to improve rigor of study
through co-coding practices.
Data was stored and managed in a secure web-based data server provided by the USC
Chan Division of Occupational Science and Occupational Therapy. For security and HIPAA
compliance during transcription, all files were encrypted before being sent through a secure
server to the contracted transcribing agency. Specific instructions were provided to the agency
for redaction of identifying information from each audio file so the transcripts were de-identified
and again encrypted prior to return. For analysis, de-identified transcripts were uploaded to
NVivo11 Software, which was held on the Division’s secure server.
Limitations of Study
This collection of data responds to a need to deeply evaluate daily experiences for AYAs
with a SCI and their caregivers in order to make important theoretical contributions, which can
affect meaningful services for this population and their families. However, there were some
limitations relating to the depth and reach of findings. The research approach was necessarily
modest in order to build a theoretical foundation for future work (Daly et al., 2007) from an emic
perspective. The study was also purposefully designed for management within the timeline of a
Qualitative research is sometimes criticized for the difficulty of achieving a large sample
size, but this appraisal undermines the value of qualitative work. The primary focus of this
qualitative study instead focused on achieving a deep understanding of phenomena to facilitate
conceptual frameworks, which can then be studied and applied in appropriate contexts. Sampling
from a range of providers and community organizations promoted a heterogeneous group of
participants. However, such diversity within a small sample size limited opportunities to
generalize findings to broader communities. Because of this, it is critical to underline that the
intent of this study was not to produce generalizable results but rather to cultivate rich data
specific to individual experiences, which can inform thinking about participation, engagement,
development, and caregiver networks for research and services. Findings are directed to a
standard of applicability rather than generalizability since generalizability is not appropriate for
most qualitative research. The applicability is enhanced by thorough descriptions of the data and
transparency of methods for data collection and analysis, as well as by strategies for triangulation
The duration of engagement may be seen as another limitation of this study since it can
be difficult to develop rapport for personal sharing without prolonged interactions, and a cross-
sectional view does not allow for delineation of cause-effect correlations in development.
However, the research aims were not longitudinal in nature, and considerable efforts were made
to build trust with participants early and to interact often. The intensity of data collection and
integration of multiple qualitative methods in this study minimized limitations of a short study
period, as evidenced by the richness of data collected. Narrative inquiry also captured
perspectives from a broad temporal horizon through reflective and anticipatory stories
throughout the duration of the study.
Another methodological concern was the impact of an outside observer during otherwise
natural activities. A number of studies have illustrated the strength of participant observation
data (e.g. Lawlor, 2009; Lawlor & Mattingly, 2001; Solomon, Angell, Yin, & Lawlor, 2015).
However, the ages of AYA participants in this study was thought to make them particularly
vulnerable to disruptions of experience caused by outside observers. As a result, parameters for
observations were discussed beforehand, AYA participants directed the selection and scheduling
of observations, and I participated in the activities with AYAs whenever possible in order to ease
anxiety of observation. I also facilitated reflections with participants afterwards to ask how my
presence may have impacted the overall experience.
Loss of independence following a SCI presumably has a devastating impact on
psychosocial development in adolescence, but opportunities for positively impacting
development may also exist when individuals are given the proper support. Known research to
date has primarily used cross-sectional approaches to assess long-term impacts of SCI on
developmental experiences during this period of life when individuals anticipate autonomy and
construct their identities through activity engagement (e.g. Wojtowicz, 2018; Zebracki,
Anderson, Chlan, & Vogel, 2010; Zebracki, Chlan, & Vogel, 2015). Therefore, the long-term
psychosocial impact of a SCI for young people, including its interface with everyday experiences
and development, is not well understood. I did not observe longitudinal impacts of a SCI in
young lives, but I did design it to build a foundation for future inquiry, which is directly
informed by the perspectives of AYAs as they experience challenges and success in their daily
lives. As such, this research considered the impacts of participation as they relate to the
biographical disruptions experienced by AYAs after they acquire a SCI, and it can be used to
identify opportunities to support participation.
Financial Disclosures and Participant Compensation
The study was supported in-part by funding from a Patient Centered Outcomes Research
Institute (PCORI) Pipeline-to-Proposal, Tier I Award ($14,950, May 2015 – Jan 2016, Contract
#3414629); along with grants from the California Foundation for Occupational Therapy (CFOT)
($4500, received October 2016) and the Society for the Study of Occupation: USA (SSO) ($600,
received September 2016). Funding was used to cover expenses including provision of stipends
and meals to AYAs and caregivers for participation, equipment and supplies, travel to hospitals
and participants’ homes, and transcription services. The PCORI award specifically supported
expenses in Phase I of the project, while grants from CFOT and SSO supported work in Phase II.
Stipends for participation.
In recognition of their time and contributions to this project, participating AYAs with a
SCI and their caregivers were each given stipends for their participation in activities throughout
Phases I-II. The participant stipend schedule is outlined in Table 1.
Table 1 - Participant Stipend Schedule
$15 stipend provided
$15 stipend provided
$30 stipend + $15 travel
compensation provided after
completion of each meeting
$30 stipend + $15 travel
compensation provided after
completion of each meeting
$25 stipend paid monthly
x4 months of active engagement
$15 stipend paid monthly
x4 months of active engagement
Approval for research activities was obtained from the University of Southern
California’s Health Sciences (HS) Institutional Review Board (IRB), and equivalent groups at
two participating hospitals (site information omitted). To protect confidentiality of participants,
names used throughout are pseudonyms, and identifiable information which was irrelevant to
analysis has been changed or omitted.
Outline of Results
A total of 17 individuals chose to enroll in the study, with nine AYAs and eight
caregivers. Table 2 provides a basic outline of cases. Specific details are scattered throughout the
findings, but to maximize protection of confidentiality, all names are pseudonyms, and case
details were omitted or altered when they were not relevant to the analysis. Additionally,
throughout the findings, identifiers are only used when it was necessary to connect several data
points together or to distinguish individual perspectives. Otherwise, case references are
intentionally vague to limit the linkage of individual case excerpts across the body of this work,
which as a gestalt could ultimately be revealing of identities.
Table 2 - Overview of Participant Dyads
AYA Paraplegia or Tetraplegia Caregiver (Relationship)
Alex Paraplegia Jessica (mother)
Alonso Paraplegia Miranda (girlfriend)
Calvin Paraplegia Carrie (mother)
Charlotte Tetraplegia Catalina (mother)
Gordon Tetraplegia Gina (spouse)
Jacob Tetraplegia Julie (mother)
Leah Tetraplegia Kathy (mother)
Omar Paraplegia Declined caregiver involvement
Pharrell Tetraplegia Gloria (mother)
This research revealed several significant features of lived experiences of AYAs and
caregivers. Some themes connect specifically to effects of SCI and secondary complications,
while others have broader salience with development, disability, interpersonal relationships, and
human experience. Furthermore, what began as a study specifically tied to SCI necessarily came
to encompass a focus on impacts of broader social and historical contexts, including intersections
of race and socioeconomic status. The findings presented in this dissertation are not exhaustive
of what the data reveal; surrounded by life stories tied to contexts that surpass time and place, I
have come to conceptualize this work as a foundation for what could inevitably capture a
lifetime of attention. The following chapters feature prominent findings to date and are organized
under broad themes of embodiment, caregiver dynamics, participation, and vulnerability.
Therefore, there is some redundancy of descriptions for methods and interrelated themes to
frame the findings in each section as they are organized for dissemination. The remaining
chapters are briefly outlined here as an overview of findings.
Chapter 4: Embodied experiences.
Chapter 4, with the manuscript titled The body and the self: Encounters with a changed
body after spinal cord injury, looks closely at AYAs’ experiences of the body to understand
ways they informed knowledge of self, injury, and opportunity. The body is the origin of
consciousness and experience; it is the place through which the world is understood and acted
upon. In the course of everyday life, individuals come to understand themselves through action
and participation – relying on sensations from- and reactions to the body. After SCI, neurological
changes were noticed in the absence of familiar functions. The inability to perform familiar
movements or habits, along with new requirements to manage the body, provoked profound
emotional reactions, often resembling trauma, frustration, and loss. “Little things,” interpreted as
particular moments when once taken-for-granted aspects of being were forced into awareness,
had significant impacts on AYAs’ lived experiences, like when an inability to perform basic
gestures served a harsh reminder of abilities and independence lost. Such experiences forced
encounters with notions of self and identity, especially as changes to the body indicated changes
in activities or routines.
Data also revealed significant social implications of changed bodies. In many cases,
AYAs believed themselves to be the same “person” after their injuries, yet they felt others
treated them differently, often diminishing their sense of worth. Individuals worked to define
themselves through activities, and this elevated the stakes of changed functions, activities, and
communities. A range of coping and adaptation strategies was observed across the cohort,
including cognitive reappraisals and dissociations of mind and body. Rehabilitation provided a
space to get acquainted with a changed body and to practice interacting in physical and social
worlds. Then, home and community life introduced new opportunities and challenges for
learning and identity construction away from protections of a medical or disability community.
Thus, experiences of- and in bodies changed by the effects of SCI revealed important
opportunities to support young people with new injuries.
Chapter 5: Multiple perspectives.
Experiences cultivate opportunities for engaging with others and learning about oneself
and the world. They are complex phenomena influenced by a multitude of factors, and they have
a strong connection to health and well-being. As such, studies of experience play an important
part in designing successful interventions and identifying meaningful outcomes in health care
and research. Capturing the essence of experiences can be challenging since the task largely
relies on personal reflections, and it necessarily involves an evaluation of physical and social
contexts. Integrating data from multiple perspectives in research designs is a valuable strategy to
address challenges to understanding experiences, including their interpersonal, interdependent,
and intersubjective natures. This is especially critical for understanding circumstances in which
two or more people share experiences or coordinate action together, like in cases of caregiving.
Most studies relating to SCI have focused on experiences of those living with SCI or of
their caregivers. Manuscript 2 (Chapter 5), titled Using multiple perspectives to understand
experience: Caregiving as an exemplar, takes a close look at the unique methodological
approach employed here to understand dynamics of action and experience that are coordinated in
complex social worlds and intensified in caregiving relationships. Caregiving necessarily
involves more than one person, indicates interdependence, and relies on intersubjectivity.
Accordingly, examining perspectives of multiple actors (AYAs and caregivers) strengthened the
ability to capture and understand experiences felt in vivo, and it underlined ways in which shared
experiences do not necessarily result in shared perspectives. To know one person’s perspective is
to know only part of a story.
Chapter 6: Participation.
Chapter 6 features the third manuscript, titled Participation after spinal cord injury:
Lived experiences of adolescents and young adults in community life. This paper focuses on the
range of activities that AYAs described as part of their day-to-day lives after SCI and related
experiences of engaging in such activities. AYAs in the cohort were involved in a range of
activities in their homes and communities; some categories were to be expected for individuals in
these age ranges, such as focusing on friends and school, while others were seemingly unique
from non-disabled peers, including an absence of autonomous roles and work experience paired
with intensified efforts to care for the body.
Many contextual factors mediated opportunities, actions, and experiences, including
interactions with caregivers, barriers and affordances of physical and social environments, and
personal perceptions of possibility. Analysis of activities and experiences in the home revealed
differences from community participation, with few activities in the home beyond self-care, and
more rich or engaging activities in community. Furthermore, circumstances for many AYAs in
the study indicated a social imbalance emerging after SCI, where they were intensely engaged
with caregivers but had decreased contact with peers. The social imbalance also precipitated
impacts on caregivers, who were immersed in attending to needs and preferences of AYAs.
Ultimately, examining participation revealed tensions among constructs of time, space, and
social dynamics as they overlapped in everyday life, and the lived experiences of AYAs
appeared to have great significance on pursuit of developmental goals.
Chapter 7: Vulnerability.
The final chapter of this dissertation addresses an overarching theme across the research:
vulnerability. Vulnerability was embedded in participant narratives and observed in the course of
their participation in everyday life. To act was to accept some level of vulnerability, be it risks to
health or well-being, of elevated awareness of changes to the body, or of implications of social
judgment. In new bodies, with changed circumstances, it seemed AYAs and their caregivers
navigated through participation with limited knowledge to guide choices or anticipate
experiences. In such ways, participants were understood to have great strength – acting in the
world with limited control of social and physical barriers. These ideas invoke the work of Panter-
Brick (2014), who has explored overlapping concepts of risk and resilience. In the context of
participants’ day-to-day lives, it was rare to exude strength without accepting risk, or
Additionally, this work ends with a personal reflection on my experiences while
immersed in the research as a doctoral student, including ways my reflexive stance was activated
throughout. In the course of conducting the research itself, I was challenged to capture the
dynamic process of lives as they are lived; to study lived experiences is to accept that life is often
messy and difficult to contain within categorical summaries for translation. Yet, it is those
features of data that distinguish this work from population-level studies. The richness of
engagement offered a deep gaze into lives as they are lived, and in turn, I felt its effect on myself
as the researcher.
Important knowledge is gained from evaluating experiences relating to SCI in
conversation with literature from interdisciplinary fields focused on development and
participation. There are many issues to consider for young people who have acquired a SCI and
are living in the community, including the impact of the injury on their identity, their ability to
assume autonomy, their chronic and evolving rehabilitation needs, the impact of the injury on
development, and also the complex negotiations of experience in daily life after injury. This
work adds to existing literature to advance our understanding of ways in which participation and
the meaning(s) of engagement for AYAs and caregivers after SCI, can influence identity,
development, and quality of life. Limited work has been done to explore these issues from the
vantage point of AYAs, who have essential knowledge about the things that influence their
experiences. Despite the disproportionately high number of youth affected by a SCI, most
existing literature is specifically focused on features or concerns of injuries for adults and older
adults (e.g. secondary health conditions, survival rates, incidence of depression). Thus, this
research addresses several dimensions of experience and participation that have been
Experiences of living with a SCI and considerations of AYA development illustrate
complex challenges for survivors, their caregivers, and also health services providers.
Participation is central to learning and development, and it contributions to identity formation as
well as adaptation to changes across the lifespan. This research adds to knowledge of how young
people personally value participation, how they negotiate it in daily life after a SCI, and how it
relates to other life processes (e.g. health, development).
Individuals with SCIs face many known challenges, but not enough work has been done
to understand how the effects of a SCI are actually experienced in the lives of young people and
their caregivers. What does participation mean to AYAs with a SCI, how is it experienced after a
SCI, and what influences participation (present and future)? Likewise, how are young people
engaged in the extensive and specialized rehabilitative care necessitated after their injuries, and
how do they come to be involved in their health management over time? All of these issues are
rooted in the interrelationships of personal contextual factors and everyday experiences, and
these questions can only be addressed through the study of lives as they are lived. Adolescents
and young adults anticipate great opportunities as they explore their own identities, spend more
time with peers, and begin to individuate from their nuclear families, but a SCI can have
devastating impacts on these experiences. This exploratory, qualitative study focused on the
lived experiences of AYAs with a SCI and their caregivers in order to understand how activities
in day-to-day life after an injury were experienced, how AYAs felt engaged as actors in their
own lives, and how experiences with an acquired disability may impact development.
A multi-level analytic framework, outlined across the three manuscripts, was necessary to
unpack effects of SCI and related circumstances on lived experiences and development. In lives,
which are by definition continuing to exist over time, individuals come to know themselves and
their environments through experience. Adolescents and young adults are particularly charged
with solidifying their identities and plotting goals for future roles and activities. Therefore,
changes in abilities and activities have the potential to impact individuals across the life course.
This research provides a more nuanced look at daily life experiences in order to contextualize
population-level data on activity and experience for AYAs with SCIs and their caregivers. Each
chapter highlights a unique, but interrelated, level of complex interactions and experiences that
occurred in day-to-day life for AYAs with a SCI and their caregivers, and they indicate links
among features of experience and development, quality of life, and sense of hope.
Use of multiple methods in this study informed complex understandings of participation
for AYAs with a SCI and their caregivers, and the strong emic perspectives gave voice to a
community, which is largely overlooked in the literature. Narratives were vehicles for
understanding the perspectives of stakeholders (Mattingly & Lawlor, 2000) and optimizing
research engagement in order to re-imagine studies in SCI rehabilitation with a patient-centered
approach. These paired with visual timelines and participant observations revealed
characteristics of daily experiences, which can inform the organization and delivery of health
services for AYAs with a SCI and their families. Ultimately, this research generated a rich
understanding of experiences for young people and their caregivers, who have been affected by a
SCI, and it is a foundation for ongoing, necessary work in occupational science, occupational
therapy, rehabilitation, disability, and developmental fields of study.
Chapter 4: Embodied Experiences
The Body and the Self: Examining Embodied Experiences to Understand
Effects of Spinal Cord Injuries for Adolescents and Young Adults
To have a body means inevitably that one is embodied; consciousness can exist only as
mediated through experienced embodiment. The body is never, therefore, simply a
physical object but rather an embodiment of consciousness and the site where
intention, meaning, and all practice originate. (Lock & Farquhar, 2007 p.6)
As Crosby (2016) described, the “body has and is a history” (p.50). Individuals enter the
world in particular social and historical contexts (Bruner, 1990a), which are felt and understood
through the body, and individuals learn through being and doing (Fox, Levitt, & Nelson, 2010;
Law, 2002; Lawlor, 2009; Wilcock, 1998). Across the life course, learning begins in the body
through movement and exploration, and engagement promotes a sense of belonging through
actions of the body (Hammell, 2014). Thus, it is through the body, and one’s relationship with
the body, that one comes to know the world and be recognized within it. Given such
significance, the purpose of this research was to study day-to-day experiences for adolescents
and young adults (AYAs) with an acquired spinal cord injury (SCI) in order to understand how
drastic changes to the body precipitated by damage to the spinal cord and sequelae of such
injuries may relate to development and well-being.
Knowledge from the Body
Implications of SCI are often defined by neurological effects on the body. Yet, the body
is deeply connected to the self and identity (Charmaz, 1995, 2002). It is the foundation of
consciousness, and thus, changes to the body presuppose effects on sense of self, or identity,
when the body itself is experienced in daily life. Phenomenology provides a lens to understand
such relationships at the level of the body (Leder, 1990; Park Lala & Kinsella, 2011; Ram &
Houston, 2015), including perceptions of ways the self is expressed and the world is understood
through the body. Understanding SCI, and more specifically, understanding the effects of SCI in
daily life, must therefore examine experiences of the self as it relates to the body.
Spinal Cord Injuries
Spinal cord injuries disrupt communication in the central nervous system, causing
paralysis and autonomic dysfunctions that devastate action and experience. After SCI,
individuals are subject to a biographical disruption (Bury, 1982), where experiences violate
common assumptions about one’s own body. Notably, embodied knowledge does not align with
experience. For individuals with an acquired SCI, the process of discovering the body begins
again after the point of injury (e.g. Clifton, 2014; Ville, 2005). However, distinct from a child
first discovering her body, experiences of individuals who acquire a disabling condition later in
life indicate feelings of loss when they must reconcile diminished or absence of once-familiar
sensations and motor skills.
Speaking from her research in chronic illness, Charmaz (1995) concluded:
Experiencing an altered body means that people with illnesses note physical changes and
diminished bodily functions… experiencing an altered body means more than having or
acquiring one. It means that these people begin to define bodily changes and symptoms
affect daily life. (p.662)
Applied in cases of SCI, damage to the cord may not be felt in and of itself; rather the injury is
realized and understood by its impact on the sensations and functions of the body as one tries to
execute familiar actions. Leder (1990) describes this as characterizing the body “by absence” (p.
1), or the “presence-absence correlative” – when functioning without difficulty, bodies largely
fall out of attention; when bodies become dysfunctional, they “seize” attention (p.4). However,
this is not to say that the self is necessarily or immediately changed. Lived experiences occur and
are perceived in a different temporal framework than self-concept (Charmaz, 1999), and
experiences must be evaluated and assigned meaning before they influence identity. Therefore,
attention to embodied experiences can shed light on injury effects and processes of change or
adaptation in vivo that are relevant to development and well-being.
Adolescence and Young Adulthood
Adolescence is a time when formation of identity and independence is paramount. Ideas
from Erikson (Erikson, 1964b; Evans, 1995) continue to endure, widely recognizing the
significance of aligning notions of the self to activity, community, and pursuit of possibilities. At
this time of life, individuals typically focus on peer relationships and give less emphasis to
family in day-to-day life (Arnett, 2000). Extending from identity, much of adolescence is also
focused on strategies for successfully engaging in social worlds. According to Csikszentmihalyi
and Larson (1984):
The simplest task of adolescence is to learn the patterns of action required for
participation in society. Teenagers must acquire habits to live by. They must learn that
there are times for sleeping and eating, for working and studying, for relaxing and
To suggest such an objective as “simple” is to either overlook difficult circumstances in which
action and experience are coordinated or to acknowledge great complexity and significance of
growth during adolescence. Regardless, psychosocial development in this time of life is built on
notions of self and motivated by ideals for belonging.
While adolescence has generally been conceptualized as “teenage” years (approximately
13-18 years of age), with adulthood (or young adulthood) immediately following, “emerging
adulthood” has gained traction in developmental theory as a phase in between under the premise
that developmental trajectories are being stretched or extended from late teens to young
adulthood; approximately ages 18-25 years (Arnett, 2000, 2007). Emerging adulthood is
distinguished by newfound independence as a legal adult but continues to have many overlaps
with the challenges of adolescence. A growing proportion of the population are entering college
before taking work, delaying marriage and having children, and generally have fewer
opportunities to experience autonomy while adult roles remain largely uncertain (Arnett, 2000).
While the form that experiences in emerging adulthood take can vary according to one’s
environment and context, it appears normative for most emerging adults to focus on developing
their identity through exploring challenges and opportunities in education, work, romantic
relationships, and parenthood (Arnett, 2016). Without potential constraints of established roles,
individuals have more latitude to explore during this time (Arnett, 2000). Thus, it is useful to
consider the significance of identity-formation in the developmental process beyond adolescence
and into early years of adulthood.
Adolescence is also the time when most individuals experience puberty (Blakemore,
Burnett, & Dahl, 2010), and executive functions for self-organization and decision-making are
still maturing (Blakemore & Choudhury, 2006). As a result, many actions are largely based on
short-term concerns or interests, and it is common to engage in high risk activities. In addition,
there are many health challenges for AYAs, including elevated rates of psychological stress and
suicidal ideations, as well as the onset of conditions that can necessitate lifelong use of health
care (Neinstein, 2013). Furthermore, such conditions have been shown to elevate rates of
depression and other mental health concerns (Ferro et al., 2017; Greydanus, Patel, & Pratt,
Complex circumstances and elevated risks surrounding adolescence and young adulthood
has led to increased awareness of the need to tailor health care services to address unique
challenges and opportunities that accompany developmental trajectories (Farre et al., 2015;
Neinstein, 2013). However, relatively little has been done in this area for SCI rehabilitation.
Remarkably, approximately 50 percent of SCIs occurring each year in the United States are
among individuals aged 30 years or younger, and more specifically, just over 25 percent of new
injuries are among individuals between the ages of 16-22 years, with 19 being the most common
age of injury (National Spinal Cord Injury Statistical Center, 2016). Therefore, individuals in
these overlapping life phases, from adolescence to young adulthood, are the focus of this work.
Given what is known about the role of the body in experiencing and understanding the
self and in carrying out actions towards development, the potentially devastating effects of SCIs
and related conditions on the body, and the significant etiology of SCI during adolescence and
young adulthood, it is important to understand intersections of psychosocial development and
psychological adaptation to injury, especially at the level of lived experience. Also, it is critical
to examine AYAs’ experiences relating to the body in order to inform more developmentally-
appropriate care in SCI rehabilitation. In the context of a larger study that involved AYAs and
their caregivers, this paper will focus specifically on findings related to embodied experiences of
AYAs with SCIs that were particularly salient with respect to developmental goals and
Research Design and Methods
Recruitment and sampling.
In order to examine day-to-day experiences of life and participation for AYAs and their
caregivers, a two-phase qualitative study was designed. Participants were recruited using
convenience and purposive sampling strategies
(Padgett, 2012) from rehabilitation hospitals and
community organizations in Los Angeles County in order to garner a diverse range of individual
experiences after SCI. Phase I recruitment targeted AYAs to give them primary control over
participation and representation before involving caregivers. AYAs were enrolled based on the
following eligibility criteria (satisfied by self-report):
• Aged 15-22 years
• No more than five years post-SCI
• History of participation in inpatient rehabilitation program following SCI
• Use of wheelchair as primary mode of mobility
• Living at least part-time in Los Angeles County (some cases of split residence)
• Fluency in English or Spanish
• No comorbidities that significantly influenced day-to-day life
Once AYAs expressed interest in participating, they were asked to nominate a primary caregiver
to enroll, who could also speak about their day-to-day experiences. Caregiver participation was
not required for AYA enrollment, but to be eligible, caregivers had to be nominated by an AYA
in the study and be fluent in spoken English or Spanish.
Phase II recruitment targets were based on preliminary findings reviewed after the
completion of Phase I. A subset of participants from Phase I were invited to proceed to Phase II
when their narratives revealed themes most salient with the overarching study objectives and
they demonstrated interest and availability for ongoing participation.
Data collection and analysis.
Data was collected using narrative and phenomenological approaches. In Phase I,
participants were individually interviewed in their homes or communities and then invited to
participate in a series of two group interviews with their peers (two meetings for AYAs and two
separate meetings for caregivers). The group interviews were organized to generate collective
narratives from individual experiences (Jacobs et al., 2011; Lawlor & Mattingly, 2001;
Mattingly, Lawlor, & Jacobs-Huey, 2002). In Phase II, AYAs and their caregivers completed
additional individual interviews (2-4 per AYA, 1-3 per caregiver). AYAs also co-constructed
of significant life experiences during their interviews with the PI, and they were
observed during an activity of their choice to garner information about tacit dimensions of
experience (Padgett, 2012).
Visual timelines were a strategy used to support the narrative process during interviews by promoting storytelling
and guiding reflections on relationships of experience with identity and possibility. This approach was modified
from analytic work and methods developed at the University of Southern California as part of the research titled,
Autism in Urban Context: Linking Heterogeneity with Health and Service Disparities (PI: Olga Solomon, Funded by
National Institute on Mental Health, National Institute of Health, R01 MH089474) and from visual diagramming
research (e.g. Bagnoli, 2009; K. F. Jackson, 2013). Timelines were analyzed in conjunction with the broader data
Over the course of study, narrative interviews were used to understand life experiences
and actions through stories from daily life relating to participation in rehabilitation and
transitions to community following an acquired SCI. Interviews were audio recorded and
transcribed verbatim for coding in NVivo11. Field notes from the researcher’s perspectives were
kept for all research encounters, including activity observations; they were used to contextualize
analysis and track researcher bias. Data were analyzed categorically, thematically, and
narratively both within- and across-cases in order to evaluate interrelations of experiences and
developmental trajectories. In order to examine the hypothesis that SCIs (and related effects) are
primarily understood through the body, specific attention was given to embodiment.
Description of the sample and data corpus.
In total, 17 individuals were enrolled in Phase I of the study: nine AYAs and eight of
their caregivers (one AYA chose not to involve a caregiver). Six Phase I participants (four AYAs
and two caregivers) went on to enroll in Phase II. At time of enrollment, AYA participants
ranged in ages from 17-22 years. Mechanisms of SCI and severity of disability varied, and times
since injuries spanned from one-month-post to nearly 4.5 years (see Table 3 for description of
At the times of their injuries, six of the nine AYAs were living with parents or guardians.
After acute hospitalizations for treatment of SCI and related injuries, one participant, who lived
with his mother prior to his injury, moved into his first independent apartment, while the other
eight discharged from the hospital to the homes of their parents. For most, this was anticipated
and developmentally-appropriate, but for the three participants, who had lived on their own prior
to their injuries, and who had to give up that independence, there were challenges of negotiating
family life in their parents’ homes once again since their ages and/or developmental progress
would typically indicate more independent living.
The sample, including caregivers, was diverse in races and ethnicities. Demographics
were collected as part of narrative interviews only, and therefore income-specific data was not
provided. However, homes, communities, and personal descriptions of educational
achievements, as well as social and financial resources indicated a vast range of socio-
demographics. For example, some AYAs had private insurance through a parent’s employer as
their primary source of financial coverage for health care services, while others had “Medical”
(Medicaid in California). Some families lived in affluent communities, one with a gated entrance
to their subdivision, while others lived in neighborhoods with high rates of poverty and modest
homes, many in disrepair. Likewise, two families made extensive home renovations after the
AYAs’ injuries, involving professional contractors for bathroom remodels and other costly
modifications, while other participants struggled to find resources for basic equipment, like a tub
bench to accommodate for bathing in otherwise inaccessible showers.
Although not criteria for enrollment, all caregivers were female, of “informal” status (i.e.
not professional caregivers), and had relationships as mothers or committed partners (girlfriends,
wives) of the AYAs. Seven of the eight were full-time caregivers, and five of these participants
reported having given up- or losing their jobs when their loved ones were injured in other to be
available for caregiving responsibilities. In most cases, additional caregivers for the AYAs were
mentioned in participant narratives, although specific delineations of roles and responsibilities
were unclear. This may indicate a fluid nature of support communities, but the study was not
designed to specifically examine caregiver networks.
All participants fulfilled maximum expectations for study activities except for one AYA
in Phase II, who was lost-to-follow-up without completing an activity observation. In total, 21
interviews were completed in Phase I, and 20 more in Phase II, along with three activity
observations. Individual interviews ranged in length from 38 – 119 minutes, with an average
duration of 77 minutes. Group interviews averaged 98 minutes in order to be contained within
two-hour meetings, allowing time for participants to get situated in the room with the meals
provided. The study design was cross-sectional in nature, but participants who were enrolled in
Phases I and II were each followed for approximately one year from the times of their first
interviews to their last.
- Description of AYA Cohort
Total (n=9) n or mean n
Age (in years) 19.3 (SD 1.7) Gender:
Time Since Injury (in months) 20.2 (SD 19.3) • Male 7
Mechanism of Injury: • Female 2
• Sport 2 Race/Ethnicity:
• Fall 1 • White 2
• Medical 1 • Black 2
• Violence (gunshot) 5* • Latino 3
Level of Injury: • Asian 1
• C1 – 4 1 • Undisclosed 1
• C5 – 8 4 Primary Caregiver:
• T1 – S5 4 • Parent (mother) 7
Complete Injury 7 • Committed Partner 2
Note: Participant characteristics were collected through self-report during interviews. Severity was not reported
by ASIA Impairment Scale; participants independently qualified their injuries as “complete” or “incomplete.”
*Exact etiology of 1 injury unknown; onset of SCI coincided with gunshot wounds and medical complications.
Tables 3 (p.104), 4 (p.140), and 5 (p.164) are identical but duplicated across findings chapters for ease of review.
Significant discoveries emerged from data analysis in relation to embodied experiences
for AYAs with a SCI. They are primarily organized for review in an order that begins with
themes at the level of the body and extends to ways in which the body, and by extension, the self,
was experienced in social spaces. However, the reality is such that these levels of experience
cannot be entirely distinguished from one another – feelings of body, impacts on self and
interactions, and ideas about hope and possibility are deeply interwoven into situated experiences
and actions in ways that cannot be understood in isolation (See Chapter 6). Such findings were
largely predicted in light of existing knowledge, but close examinations of experiences in vivo
highlight particular phenomena that advance our understanding of the impacts of SCIs of AYAs,
along with opportunities to support their lives post-injury.
Changed bodies, changed selves – Lessons from the body.
Beginning from the moment their spinal cords were impacted, several AYAs had a sense
that their lives were changed, even when they had no knowledge about their injuries or
implications of damage to the spinal cord. For example, Alex’s spinal cord was damaged by a
bullet from gunshot, and it was striking how quickly sensations of the body shaped his
knowledge. Here, he described the first time someone explained what a SCI was and how it
would affect him:
I mean I kind of already had a feeling because when I first got shot, I already knew I was
paralyzed. When the bullet hit me, I fell down instantly, and I couldn't feel my feet, and
To maximize protection of participants’ identities, all names are pseudonyms, and pseudonyms are only used when
necessary to discuss a participant across several data points. In addition, details of each case not relevant to the
analysis have been concealed or altered when appropriate or necessary.
so I was already yelling that I was paralyzed. I mean I already knew that I wasn't going to
be able to- I was hoping that it would go like in two weeks, three weeks. That's what I
was aiming for, like hopefully in two or three weeks, I'll get my feeling back. But after
that, just no feelings, so I already knew what was going to happen. I don't know how to
Prior to his own injury and hospitalization, Alex had never heard of SCIs, yet an inability to
stand or feel his feet forced an immediate awareness of change; he came to know his injury by
the ways it made him feel and changes in how he functioned.
Adolescents and young adults across the cohort suggested how direct effects of their
injuries (e.g. neurologic dysfunction) ultimately manifested as foreign bodies, or what Leder
(1990, p. 73) and Charmaz (1995, p. 675) have both referred to as “alien” forms. Things
previously taken-for-granted – like abilities to scratch one’s own nose, feel warmth against the
skin, control bladder and bowel functions, walk across the room, or even to recognize how the
body is positioned in its environment without looking – were forced into consciousness when
such functions were no longer part of being. For example, regardless of effort, with a SCI in the
cervical or thoracic regions, one can know very little about his or her legs without visual
inspection to understand their mass, position, and skin integrity; nerves for sensation and
movement are impaired, so signals cannot travel through the central nervous system to these
parts of the body. Thus, to not look is to not know the quality of one’s legs, and even still, seeing
is not equivalent to feeling or controlling.
In some cases, AYAs appeared to dissociate their minds from their bodies in what were
likely strategies for emotional coping or self-preservation; ignoring changes of the body allowed
AYAs to deny changes to themselves. Most commonly, this manifested in distancing the self
from personal care practices. For example, one man in the study refused to participate in his
intermittent catheterizations (“ICs”), which were completed every few hours to empty his
bladder. Nearly three years post-injury, his caregiver reported he still would not so much as
watch the procedure, and therefore, he had not learned about IC and could not direct others to
help with this aspect of his care. This made him especially dependent on his primary caregiver,
and demands of the care interfered with the caregiver’s personal responsibilities and activity
schedules. During one interview, the caregiver was quite activated about this issue. She said:
It’s mainly just been the ICs. And I’m trying to get him to understand, like, you know, I
mean, what I’m about to say is kind of mean, but I try to get him to understand, like,
you’re a grown man, you’re 22, and you’ve been paralyzed for three years, so you know
your needs, you know you- you know your wants, you know what is mandatory, you
know your priorities, you know what you’re supposed to do.
And, so, I kind of tell him like, you know, I’m not the one who needs the IC.
You’re the one who needs the IC. So if you need something, call the people that you need
to come and do it… You don’t want to learn how to do your ICs on your own, which you
can, it’s just something that you’re going to have to do repeatedly, and you’re just going
to have to get over whatever you got going on in your head and do it. But until then,
you’re going to have to rely on someone to come and do the ICs for you.
In spite of the frustration this caregiver felt, the issue never came up in the AYAs’
interviews, perhaps indicating it was not an issue he was aware of or wanted to address. The
AYAs’ separation of his body and mind, performed as diverting conscious attention away from
management of the body, are akin to ways in which Clifton (2014) described his body as a
“second person” after his SCI, elaborating that he considered his body “either dead, or [it] has let
me down so badly that ‘he’ might as well be” (p. 1825). Accordingly, attendants cared for his
body while he occupied his mind in other ways. Still, it was impossible to entirely ignore the
body, especially in ways that it felt and acted (or failed to feel and act), and AYAs were forced to
acknowledge – even if through the coordination of caregivers – a body different than what they
had previously known. This ultimately impacted senses of self, confidence, and orientations to
the worlds in which they spent time.
Across cases, “little things” were often the focus of stories from day-to-day life.
Difficulty completing seemingly minute or mundane tasks, or the loss of “simple” experiences
seemed to be when the AYAs were confronted by change. Perhaps it was easier to understand or
anticipate loss of independence with complex activities, like walking, since the requisite skills
felt far from current states of being, but inabilities to respond in the moment to needs of the body
or to address personal discomforts were remarkably difficult. One AYA said:
Yeah, like wow, like the simplest things are- I think that's what pisses me off the most,
the simplest things that I used to do. I'm learning that- I mean you have to learn it again,
but it just irritates me- just irritates me a lot. Just last year this time, I was doing this with
no problem... It's just- it just gets me a little irritated.
Code language in the narratives included terms like “little” and “simple” to describe unexpected
reminders of loss or disability. Needing help for the “little” or “simple” things appeared to
profoundly influence confidence and quality of life. Emic perspectives thus indicated that it was
often “little things” that came to have a monumental impact on lived experiences.
“Little things” were also linked to the significance of “larger” or more complex skills.
Reflections on gross motor functions, including and perhaps especially walking, were about more
than the discrete skills – they provided the foundation for particular moments or actions to
interact and express oneself. As one participant said:
I mean, walking is not everything, but it- it is to me, kind of. Like, it's just, like, just- it's
just indescribable. Like, I don't know. Like, just- I don't know. It's just- I just want it. I
just want it bad. But I don't know how to explain. It's just- I wanna get back to- I’m not
gonna say get back to my old life, but I wanna get back to livin’. I mean, I’m livin’. I
have fun all the time, but I’m talking about, like, just, like, being able to play with my
niece how I wanna play with her. Being able to just- just do- play ball, again. Do all types
of stuff, you know? … So, like, just little stuff. I mean, just the little stuff.
Having uninhibited strength and movement to not only walk, but to also “play” with others or
express affection was characterized in the data as a proxy for capability, control, and
independence. As illustrated in this excerpt, walking was considered the missing link between
present life and what one was; a way to “get back to livin’,” to “do all type of stuff,” “the little
stuff.” The “little stuff” was significant for its influence on self, and by extension, its influence
on activity and place in society.
Emotional consequences of losing power.
Loss of once-mastered abilities, like dressing, standing, grooming, or driving, contested
notions of self for AYAs and provoked a range of deep emotional responses in day-to-day life
when AYAs encountered changed bodies and practices. Functions of the body held significance
for ideas about the self and how the self was valued in society. As Erikson (1964a) wrote,
humans are “at all times an organism, an ego, and a member of society, and [are] involved in all
three processes of organization” (p. 36). To experience a change to the body was to experience
disruption of identity and be vulnerable to breakdown of interactions of self and community.
This was especially poignant for AYAs with gang affiliations, whose established roles in
everyday life depended on physical strength and power. Over time, some AYAs came to feel
burdensome when they had to request assistance for tasks that were performed without concerted
thought or effort in “able” bodies. Resultantly, some AYAs developed strategies to modify
activities or environments to maximize their independence, while others seemingly reverted to
dissociating with the body, as described above.
Expressions of grief, including sadness and anger, were observed across the cohort.
Additionally, perhaps reflecting a “sense of betrayal” by the body (Charmaz, 1995, p. 662), a
frequently shared sentiment was that of feeling “humbled” when bodies felt limited or fragile. In
one of the AYA group interviews, AYAs confirmed this shared experience:
Pharrell: Yeah, I got humbled for real.
Alonso: That’s the word. It’s humbling being in the chair.
Inability to control one’s own body paired with corresponding needs for assistance left many
AYAs feeling a diminished sense of personal value or power, especially for men in the study,
whose descriptions of life before injury were defined by abilities to physically control their
environments (e.g. overcoming and/or contributing to violence in the streets of communities
notorious for gang and drug activity). According to Charmaz (2002), “A view of the body as
invincible makes the onset of a debilitating illness incomprehensible” (p.355).
Changes to physical bodies and abilities elicited fear and insecurity, as in cases when
AYAs no longer felt able to protect themselves and their loved ones. In a group interview, one
caregiver described an event that had occurred only two days after her boyfriend transitioned
home from his rehabilitation:
Miranda: I got into a fight with two girls. They didn't do nothing to me… They didn't
drop me. It was just like over. Later, right when, you know, I caught my breath back and
everything, I got in the car with him, and he was crying and he told me not to ever do that
again because he can't get off and help me, and that he feels- what's the word, when you
can't do nothing?
Another Caregiver in the group: Right, like helpless.
Maria: Yeah, yeah. And it's hard.
She shared the story marking a change in their normal engagements. Losing the ability to
physically assert himself changed this AYA’s relationships with his loved ones and his
community, where fighting was a part of their culture. Thus, effects of his injury encompassed
changes to the roles and practices in this relationship, and it necessitated behavioral changes
even for his loved ones, who he asked to reconsider instincts towards confrontation.
Furthermore, it seemed to affect perceptions of worth when he articulated his own goals of
recovery to be to provide for his family. Advocating for non-violence was a new means of
protection he could cultivate with his changed body.
Returning to the experience of losing control of one’s own bladder function, another
AYA in the study, Omar, reported that the ICs made him feel “down,” “humbled,” and
“vulnerable.” Describing the “hardest thing” since his injury, he said:
Omar: The IC. Shit. Yeah, I don’t like that.
CH: Can you say more about that?
Omar: I just don’t like it. I just don’t like the IC because I don’t want to see a fucking
tube going down my shit, you know? Fuck. No. Fuck… You know? What the hell?
Damn, man. You know what? They actually made me suffer. They actually put me down.
They actually humbled my ass. They actually made me vulnerable. This man [referring to
Facing limitations of one’s own body was a somber experience, and routine care, like ICs, were a
frequent reminder of functions that were lost. Prior to his SCI, Omar had been involved in gangs,
where he was taught that strength and power were necessary for survival. Losing some control of
his body “put him down” and made him question his personal sense of worth. To empty his
bladder, he had to insert a catheter through his urethra every few hours, and this reality, while
seemingly requiring less energy and attention than some other aspects of daily life, was a
prominent source of his suffering.
Same, but different.
In spite of extensive reflections on changed bodies, routines, and even mindsets post-
injury, many AYAs remarked how they were the “same person” after their injuries. The AYAs
did not want to be treated differently than how they were before their SCIs, and there was tension
between defining themselves by what they did physically with their bodies versus what they felt
was at the core of their selves: personality, character. AYAs worked hard to manage their
identities, but there were limits to what could be controlled – mainly, the reactions of others.
Being out in the community was especially difficult for AYAs. Several stories focused on times
when AYAs felt minimized because of their injuries – from reflections on being babied, when
others assumed extensive limitations, to experiences of losing their voice and having difficulty
advocating for themselves. Leah, a 22-year-old with tetraplegia, shared a remarkable example of
an experience when even professionals failed to distinguish between physical disability and
[About a year after my injury, my mom and I went to an agency to find a professional
caregiver.] And then I went, and, you know, I was sitting in my chair, and then my mom
was talking to the lady, and- and then I was, like, trying to respond to her. I was, like,
“This is what I need: blah, blah, blah,” and she wouldn’t look at me or talk to me, and I
was like, “I’m the client here.” And then she was, like, “Oh, is she, like, okay up there?”
[gestured to head] And she referred to me as a “she,” and I was, like, “I’m, like, right
here, okay?” And this is just, like, so- I mean, I get it. Maybe she has other people like
patients or clients, who made her feel like she- it was okay to do this, but it’s not okay.
It’s weird, right?
CH: What did you do?
Leah: I didn’t do anything. I didn’t even stand up for myself. I just got mad, and then I
rolled away because I was so mad. And then I just, like, kind of just got mad on my own.
I didn’t tell her anything- I just like- [trailed off].
Some AYAs were literally voiceless in the acute stages following their injuries due to reliance on
mechanical ventilation through a tracheostomy for breathing. However, stigma associated with
disability also had the effect of taking away a sense of voice when individuals were diminished
by responses from other people in social worlds. This was one of many stories when AYAs felt
negatively judged or dismissed as a result of their visible disabilities, and although Leah tried to
brush off this experience, it was difficult to not feel the insult to her self-worth. One AYA even
described feeling like a “piece of meat” when her body was studied and manipulated in the
hospital without any acknowledgement of its connection to her as a person. Doctors literally
spoke over her body but did not engage her in care, and with significant paralysis, she had
difficulty expressing herself.
Experiences of AYAs with SCIs in this study revealed significant ways in which the loss
of physical functions or control of the body could be infantilizing. Charlotte was a 20-year-old
woman whose spinal cord was damaged by a hemorrhage affecting the high cervical to low
thoracic regions. As a result, Charlotte was paralyzed from her neck down, although her sensory
functions were partially preserved. She used a mechanical ventilator at all times for respiration,
and she had limited strength to move her head. We first met about six months after her injury,
and during her interview she told me:
See the baby over there in that picture? [CH: Oh, yes.] That's my godson. And she [my
mother] jokes around, and she says we're at the same stage.
Mother interjects: But I said it once or twice and you didn't like it, and I'm not saying it
Charlotte: Like, he just started eating and I was just starting to eat again. Or I need to pee
and poo, and she's like, "Oh, you're just a baby again." I didn't like it at the time because I
was just getting through this. But I make jokes all the time about my condition. It's better
to keep a lively spirit.
Charlotte and her mother kept the mood light. They laughed, but Charlotte described physical
and emotional pain coinciding with loss of bodily functions. When Charlotte said her mother
equated her to the stage of a baby, her mother quickly interjected to say she did not say it
anymore, suggesting a history of tension that was confirmed when Charlotte clarified that she
“didn’t like it at the time because [she] was just getting through this.” Charlotte and her infant
godson were both learning to feed themselves, and they needed help with every activity of daily
living, including bladder and bowel management, yet Charlotte resisted the notion that she was
like a baby. Being equated to a baby stripped Charlotte of her accomplishments, and with that,
the status she felt as a woman at the brink of her independence in adulthood. From the way she
spoke it seemed Charlotte knew she had achieved more and wanted to believe her capabilities
were different. Still, from her mother’s perspective, the care she required was similar to that
which had been provided when she was an infant. Both Charlotte and her mother were trying to
understand Charlotte’s changed body, and it was difficult to not let her physical self minimize
her as a person.
Infantilization linked to loss of controlled functions after injury is particularly concerning
for AYAs, who are typically at a period in development where experiences of independence are
paramount, and identity is solidified through actions and relationships. However, beyond some
possible parallels between physical needs of young children and those with paralysis, some
AYAs described ways in which their injuries had metaphorically stimulated re-birth, suggesting
a strong link between their physical experience and identity. In his individual interview, one
mentioned this specifically:
Omar: This changed me now because it’s like I’m reborn again. Learning how to walk.
Well, I’m not walking yet but diapers and all that.
And separately, another AYA described a sense of rebirth beyond physical functions.
Gordon: At the same time, it's- for us to be so young, and just being in these chairs, it's
like you got a whole new life. You got a- I don't know, it's like just being reborn again.
New bodies came with new opportunities to understand the body and physical functions. They
also came with opportunities to redefine themselves and their locations in society, which was
particularly important to AYAs, whose lives had been deeply-rooted in histories of fighting for
power by means of violence or physical threat. Changes to the body came with opportunities to
escape such worlds, sometimes by choice, but other times by circumstance when their peers no
longer valued their contributions and did not include them in their groups. Being “reborn” with a
new or unfamiliar body during adolescence or young adulthood magnified opportunities and
challenges of forming identities and developing skills to carry forward across the lifespan.
Uncertainty invoked by changes to the body after SCI altered nearly every experience in
day-to-day life. Data from Calvin provided a different way to understand effects of SCI by
attending to experiences with the body. Calvin was a 17-year-old, who was injured in a sporting
accident. He grew up in a suburban community with a close and loving family. During his
individual interview, he described himself as being naturally motivated during his physical and
occupational therapies, but there were experiences that challenged his initiative. In a story about
his first days in inpatient rehabilitation, he alluded to insecurity during movement that came from
no longer being able to feel any parts of his body below his chest. Loss of sensation and motor
control made it difficult for him to change positions, and especially to move from one surface to
another, like from a bed to a chair. He described the first time getting into a wheelchair:
I didn't like [getting into a chair] either. It was- I guess it was kind of scary. That was
really the first time I was moving away from anything without- I don't know, like even
today it's kind of crazy. You don't feel like where you're at. It’s like you feel it up here [in
the chest and arms], but you don't- like you're sitting on something, but it doesn't- so that
might have been kind of scary.
In my observations with Calvin, and from other aspects of his narrative, it was clear that he had
learned strategies to compensate over time, as he was comfortable moving in a variety of settings
with little-to-no assistance. However, in this interview, approximately one year after his injury,
Calvin did not finish his own sentence as he recalled early experiences. Instead, he trailed off and
shifted to speculation of what it “might have” been like. This could be indicative of a broken
narrative, described by Kirmayer (2000) as times of breakdown in the construction of reality.
Rhetorical analyses reveal these as possible indicators of pain or dislocation. In clinical contexts,
broken narratives can serve as metaphors in cases of trauma, and they may reflect ways in which
individuals have yet to assign meaning to experience. In this case, it is possible that explicit
consideration of these challenges felt too close or too raw to describe. Calvin could not yet put
words to the experience of sitting without feeling pressure or knowing the position of his lower
body, so he instead provided a hypothetical “might have” explanation. Alternatively, such
speculation might be interpreted as successful adjustment to his new body; moving without being
able to feel his lower body had become a new normal. Perhaps it was only in conscious
reflection, provoked through the interview, that such a reality felt strange again.
Embodied experiences after SCI were confusing – a violation of once-held “truths.” Yet,
for these AYAs, the developmental horizon still felt long, and narratives were flooded with
reflections of work to reconcile old dreams with new bodies and unknown futures. Being injured
early in life raised the stakes of all that had to be sorted out, like managing the body, pursuing
education or employment, understanding sexual functions and fertility, and perhaps above all,
reconciling identities; experiences mattered. AYAs had been able to accomplish all the “little
stuff” without much thought before their injuries, and they expressed a satisfaction associated
with independent control of their bodies and unchallenged abilities to interact with people and
things. Now, such experiences felt distant – situated in past selves and desired futures.
Reconciling past and present knowledge of the body was difficult work for all AYAs,
although rates of adjustment varied greatly, and they were non-linear, sometimes vacillating
between dislocation and coherence. However, many narratives in the study revealed
disorientation to the present, like in the case of Pharrell, who wavered between past and present
reflections of self and experience when he introduced himself for the first time in the study:
Pharrell: I'm 20 years old. I like sports. I like hanging out with friends.
CH: What kind of sports?
Pharrell: My main sport- my favorite sport is basketball, but I like football, baseball,
track. I even watch soccer.
CH: Do you play any sports?
Pharrell: I play basketball… I used to play like on the weekends. It's like open gym, like
over where my grandma stays. So it's like we just get to go in the gym from like eight in
the morning to like two, and just get some good runs in.
Within seconds, Pharrell shifted from present tense to past tense (underlined in excerpt for
emphasis) and back again, perhaps indicating ways in which his unconscious self, developed
over a lifetime of experience, did not align with his present experience. Pharrell resisted
participating in adaptive sports and commented on several occasions that he would only play
again if he regained full strength and functions of his body. Regardless, he initially portrayed
himself as an athlete, seemingly comfortable describing himself as active and athletic, before
briefly dropping into past tense, indicating a change in activity and experience: basketball was
something he “used to play.” Then, in a flash, his description of self and circumstances returned
to present tense, even though not directly aligning with his current activities and participation,
reflecting some incoherence in what he knew about himself and how he spent/spends his time.
Experiences of the AYAs in acute periods following their SCIs were analogous to
phenomena at the onset of chronic illness described by Becker (1997, p. 46), where changed
bodies force individuals to reinvent their lives:
People who experience the sudden onset of a chronic illness face the destruction of life
itself, the destruction of the habituated, embodied self, as well as uncertainty about
whether they have time left to create themselves anew. They are immersed
simultaneously in addressing the possible end of their lives and learning how they will
manage in daily life if they live. (p.46)
Lack of coherence is a challenge for individuals whose lives have been “disrupted” by injury or
illness (Becker, 1997). Individual narratives are generally constructed to have before- and afters,
to indicate cause- and effect, and to follow familiar forms of stories with a beginning, middle,
and end, even when the end is not yet realized (Becker, 1997; Mattingly, 2010). However, when
an injury experience disconnects the past from the present, it can also cut off connections with
the future, leaving individuals in a “limbo-like state,” (Becker, 1997, p. 38) akin to that of
Turner’s liminality (Turner, Abrahams, & Harris, 1969), where one is removed from the familiar
while undergoing change.
Rehabilitation provided time and space to start again – slowly engaging with the body in
a variety of activities designed to maximize recovery of functions (through remediation and/or
compensation). During acute care, AYAs focused primarily on building strength in preserved
muscles and learning compensatory strategies to function in spite of paralysis. This varied with
individual needs, interests, and circumstances of injury, like one AYA who focused on direction
of care and use of eye gaze for engaging in her environment and another whose goals included
gait re-training and driving with hand controls. However, even when participation was supported
in rehabilitation, getting acquainted with the changed body was difficult.
In the course of rehabilitation, functional gains were celebrated, but they also served as
reminders of all that had changed in the body. For example, one AYA was beginning to do some
standing with support in his therapy sessions, but the effort required to do something that once
seemed so simple was frustrating. He said to me:
Trying to stand myself up on my own. I finally built the strength to do that. I mean it's not
100 percent right now, but oh, my goodness, like just getting up off the mat, and like just
lifting yourself up, like just how you would get up right now, like no sweat. You wouldn't
even think about it. And it really takes a lot just to build your- just to get your momentum
and just get yourself up. It was like- kind of pissed me off a little bit.
More than a year of hard work had gotten him to a point where he could try to stand, and it was
frustrating to consider that without a SCI, one “wouldn’t even think about it.”
Time and experience played important roles in reacquainting with the body after injury.
However, focusing on the body also provoked many challenges, particularly in the face of failed
attempts to activate a muscle contraction or to complete a task, like the aforementioned instance
of being unable to protect a loved one during conflict. In his personal narrative of experiences
with spinal cord damage resulting from a tumor, Murphy (1987) reflected, “For a while, I
occasionally tried to will the legs to move, but each futile attempt was psychologically
devastating, leaving me feeling broken and helpless. I soon stopped trying” (p.88). In a
neurologically healthy body, one has an opportunity to feel strength, control, and mastery with
repetitive exercise. In contrast, concentrating on controlling parts of the body impacted by SCI
incited frustration and grief. Exercise was a reminder of one’s limitations in the face of injury to
the central nervous system. Prior life experience had taught many AYAs that determination was
an antidote to limitations, but physical grit and concentration were not enough to overcome nerve
damage. Thus, activities in physical and occupational therapy offered lessons on limitations of
will. As a result, some AYAs focused on cognitive reappraisal as a method for adaptation, or
they shifted to focus on markers of participation, rather than fixating on narrow margins for
progress in physical strength.
Participation as a means of remaking the self.
Remaking the self also came about in activities of daily life. Likewise, lacking
opportunities to express oneself or engage in activities appeared to be a core source of
disorientation to self and community. Taylor (2005) described the body as “not so much a thing
as an –ing” (p.745), meaning bodies are a tool for performance of mind and culture, and also
bodies take shape through action, or practices, like playing, eating, and learning. The body is also
implicated in the execution of habits, which serve to link the self to social worlds and distinguish
self from others; thus, shaping the self (Charmaz, 2002). Habits can be thoughts or actions,
including how one thinks of oneself or responds to a situation. They are also deeply ingrained in
the self, to the point where many habits are unconscious (Charmaz, 2002; Clark, 2000), and they
become noticed when one can no longer fulfill them, much like how the body is most noticed in
its absence (Leder, 1990). Habits were also implicated in the “little things” AYAs described as
ways of expressing the self and engaging with others.
Actions of the body, including habits and larger, more intentional chunks of activity, are
means of expressing character traits, fulfilling roles, and connecting with others through familiar
practices, and actions were featured in the ways AYAs described themselves in the course of the
study. For example, some AYAs labeled themselves as students, athletes, or entrepreneurs, to
name a few. However, there was a notable difference in descriptions of self for AYAs who had
not yet found ways of participating in meaningful roles after their injuries – it appeared more
difficult to define the self.
Leah emerged as an exemplar of measuring progress (and by extension, effects of SCI)
by participation, rather than physical ability. Leah was a young woman with a cervical-level SCI.
In the years after her SCI, she stayed engaged in physical therapies with great investments of
time and money, but as lived experiences accumulated with a disabled body, she began to
measure her success based on gains in school and progress towards other developmental goals,
more so than motor skills or strength itself. In one interview, she said:
It’s important to feel like you have- you have a purpose with anyone; like, not just
someone with a spinal cord injury, so, yeah. If not, then it gets- every day gets boring,
and you start feeling depressed, and you start, like, feeling useless. That’s the worst. But,
… I feel like in the beginning you’re very focused on, like, your recovery. In the
beginning you’re, like, oh, the injury, it’s like a broken leg or whatever, you want to do
everything you can do to walk again or, like, you want to overcome this, but now that it’s
been four years- four and a half years even- it’s, like, now it’s kind of, like- obviously, I
want to walk again, but it’s not so important anymore.
Instead, Leah spoke with pride about her accomplishments of returning to college, graduating
with a bachelor’s degree, finding employment, preparing for graduate school, and beginning to
Across the data corpus, there was a range of examples of when AYAs engaged with
experiences of the body to learn about themselves after injury. For example, in one of the group
interviews Leah was asked to share the last time she tried something new; she said:
I guess just like going out, and when you go places like sitting in booths or not staying in
your chair all the time is really good.
This stimulated a conversation among participants:
Pharrell: I did that on my birthday.
Leah: Yeah. It’s like realizing that you don’t have to be confined in your chair.
Her story illustrated the importance of having new and varied experiences, even in familiar
spaces. Spending time outside of her wheelchair helped her realize she had other options. Not
being “confined” to her chair was a reality she only accepted when she experienced something
outside of the chair. As Leah shared this story in a group interview, several peers underscored
her point by sharing similar experiences, including Pharrell, the young man with tetraplegia, who
remembered getting into a booth on his birthday. This agreement among AYAs indicated the
significance of seemingly mundane experiences, which impacted sense of self and possibility for
these young people.
New activities, new worlds.
From longitudinal work to understand disease and aging, Power and colleagues (2013)
reported on the significance of embodied experiences:
Biological embedding, or embodiment, refers to the processes through which extrinsic
factors experienced at different life stages “get under the skin,” i.e., alter the body’s
biological functions or structures. These processes may involve development associated
with critical periods, habituation, learning, damage, or repair. (p.21)
In adolescence and young adulthood, sudden encounters of- and with an unknown body
precipitated questions about self and possibility, and they appeared to influence mental health
and activation after injury. However, support to attempt activities and explore personal interests
softened the disruption, making it easier for AYAs to bridge past selves with present
circumstances and future goals.
The extent to which activities prior to injury had been associated with control of the body
(e.g. performing in sport, art) related to challenges post-injury. AYAs whose interests or hobbies
were directly impacted by their injuries seemed to experience greater loss or difficulty adjusting,
especially when no alternative, meaningful activities were introduced post-injury. This was
perhaps most striking for young men who came from gang communities. These AYAs
individually alluded to ways in which their survival had felt hinged on power and strength prior
to their injuries, and post-injury, their bodies were thought to be of little use in such cultures;
social support dissipated, and they had few resources to explore alternative interests, especially
when still at risk for harm in their environments. Complex relationships of street life and the
body related only to a specific subset of the study group and are beyond the scope of this paper.
However, examples of ways in which once-prominent foci were made difficult after injury were
salient across the cohort, and AYAs searched for ways to satisfy their passions.
One AYA had devoted much of his life to motocross racing, and a negative effect of his
injury was no longer being able to feel the joy of riding and competing. He deeply missed the
experience of something he was used to doing nearly every day, so on a brief trip home from
inpatient care to assess the accessibility of his family’s house, he asked his father to help him
mount a bike in their garage. During his individual interview, I asked how he felt in that moment,
to which he replied:
In the moment, nothing, like not too much. Now that I think about it, and the way, um, I
still think about riding, obviously I haven't forgotten about it. Yeah. I pretty much loved
everything down to the feeling of just sitting on the bike. Just where everything's at, like
where your body's at, and what you're holding on to, and just positioning. And I think it
was a cool feeling to be just sitting back on it, so it had to have been, whether I remember
it clearly or not. It had to have been a pretty cool feeling.
Getting back on his bike was the first thing he wanted to do upon returning home, and this story
had been important enough for him to spontaneously share during his interview. However, in the
retelling, he could not even remember how it felt. He assumed it had been “pretty cool,” but why
could he not remember? The apparent absence of an emotional response from the experience
seems to tell a bigger story about how his memory of the activity prior to injury filled in gaps for
what was missing after, when he could not actually feel his body’s position or have the
experience of riding, and it was another reminder of the dislocation he likely felt in his changed
body. Likewise, as in the aspect of his narrative presented earlier, when he felt insecure moving
his body without proprioception, it was possible that a profound sense of pain or loss prevented
him from finishing the story.
For this AYA, motocross was an activity he shared with his father. It was a prominent
theme in his interview, from telling how he had begun riding at the age of three, how he had
spent nearly every weekend at the track, and how he was pursuing a professional life in racing.
Now, with paralysis, he had to find other ways to pursue this interest. For instance, while he was
still in the hospital, a friend introduced a new activity, related, but different, which could be done
in spite of his level of paralysis: radio-controlled (RC) car racing. He shared:
I have a buddy that got me into racing RC cars, so radio-control cars, which has pretty
similar connections, off road racing. So, it's- I mean working on the stuff and then racing
them, which is pretty much what I did with dirt bikes.
Additionally, he was looking at ways of channeling his interests in school:
I know pretty much my only interests are anything that- not only interests, but the only
things I've been like truly interested in was riding and working on stuff. So, I think I'll
have to chase that, something like that. And then so like maybe mechanical engineer or
something like that.
Yet, even with some alignment, his stories indicated nothing could match sensations of riding,
and he was no longer engaging with the racing community in ways he had before.
Social implications of changed bodies.
Since activities are largely social (A. L. Strauss, 2011), changes in activities and
participation also impacted relationships, such as the case of Calvin, who shifted from dirt bikes
to RC cars, or young men previously involved in street life, whose “brothers” failed to show up
after their injuries. AYAs learned about their bodies in social experiences, focusing in particular
on ways in which their peers and other social communities responded to them after their injuries
and the extent to which interactions were influenced by disabled bodies. Predominantly, the
cohort of AYAs wanted to be treated “normally,” as if their disabilities were not a factor in their
identities or actions, but this was a difficult task since, even with strong social support, day-to-
day activities and routines necessarily changed. For example, at school, Calvin missed lunch
each day for self-care, and he transitioned between classes on a slightly different schedule than
most students so that he would have space to move in the hallways. His hobbies also changed:
What we do isn't the same, like there's a friend that I see him every day at school, and I
don't think we're together half as much because we were pretty much always on bikes.
We'd always- like every time I was with him, we were riding bicycles or something. So, I
don't see him as much. And that's also someone I rode dirt bikes with a lot, like when- if
his dad was off during the week, I'd go with them and ride, and ride on the weekend with
my dad. So, that's someone that I'm definitely not with as much.
But there's- like I said, I was pretty much into anything on wheels, so I skated
also. There's a friend that I used to skate with pretty much every day that I'm with every
day still. Like we don't skate anymore, but… I'm pretty much with him every day. And
then I'm probably closer to the friend with the RC cars because I do that with him now,
which we were still close before, but now we're with each other a lot more doing that and
Maintaining friendships required a commitment on the part of friends to align their activities
with his, even when they were different than the interests they shared before his injury. The
willingness of Calvin’s friends to do this boosted his confidence and supported adaptation and
return to community after injury, but this was not the case for all AYAs. In many instances,
changed activities and routines separated AYAs from their friends, stimulating feelings of
abandonment and isolation. In an individual interview, one AYA said:
It feels like I was kind of hurt by- like a couple- well, just one of my friends really. I used
to be with him like every day, like every single- or two of my friends actually, every
single day. And like they came to the hospital when I first- when it first happened… You
ain't that busy. So, it's just a little disappointing, like man, I'm supposed to be your
brother, and you're not even- like he didn't even call me since I've been here.
Limitations of trusting the body.
To learn about their bodies, themselves, and what might be possible again, AYAs
reflected on sensations of the body, experiences of participation, and social responses as critical
sources of information. Participant observations also revealed how such bases of knowledge or
influence were highly individualized. Although there were no clear patterns in preferences or
perceived reliability of information sources, preferences seemed to center on trust – of people,
and ultimately of the relationships they had with themselves.
Reliance on experiences of- and in the body were especially significant in cases when
AYAs had few trusted sources of information, like AYAs who did not have strong relationships
with health care providers and/or who had limited social support. AYAs looked to their bodies to
understand their injuries and abilities, and also to consider future possibilities (prognosis). One
man with paralysis throughout his torso and lower extremities was considering relationships after
his SCI. He was interested in having a romantic partner, but he had limited communication with
health care providers, and even when he tried to ask about sexual function after SCI, responses
were not satisfactory. In one interview, he described how he observed his body to understand
I could have [been in a relationship], but I don’t want to be because I feel like I would be
a burden, you know, to her… Because I’m not going to be: 1) Sexuality, I’m not good for
that anymore. 2) I’m not going to be like- there’s not many things I can do as quickly.
You know, what happens in an emergency or anything like that, you know?... I don’t
think I could support anybody else like that, you know. So, I told her no. I had to push
When I asked him to explain why he thought he could not be sexual with a partner, he said he
had tried to talk with his doctor, but ultimately, he did not get any information. He said, “She
was going to keep getting into sexual education, but she never did. So, I got no education on that
In lieu of sexual education from a health care provider, he turned to his body as his
primary source of information:
I’m just going to go based on my own ideas. I just feel like the more I keep moving my
legs, the more my sensitivity comes back in my legs… So, there’s nothing else I could do
but just keeping working on it.
Without anything else to draw from, this AYA felt recovery of motor control and sensations
were his only hopes for returning to activities he valued, including intimate relationships, and he
was banking all of his energy on rehabilitation since an able body was the only way he could
imagine his future. The inability to imagine the self or a reality beyond the disabled body is what
Murphy described as disability’s way of having a “tyrannical hold of the mind” (Murphy, 1987,
p. 105). In such ways, the body itself, especially with limited experiences of participation, was
unable to motivate adaptive action and constrained ideas about the future, and it could serve as a
detriment to development and quality of life.
Looking at experiences of- and with bodies in day-to-day life generates a deeper
understanding of the effects of SCI for AYAs. After initial damage to the spinal cord, AYAs
come to know their injuries, and with that, their changed bodies, through action and experiences
in social worlds. Over time, lived experiences – good and bad – impact their senses of self and
possibility. In the course of development, individuals encounter the world through their bodies
and generate knowledge through experiences, which largely build on one another over time
through steps of confirming and disconfirming past associations. Coherence among past and
present experiences of self are important for building confidence and guiding goal-oriented
action in adolescence and young adulthood. However, looking across this cohort of AYAs,
narratives revealed striking moments when experiences after injury violated and disrupted
knowledge of self and orientation to community, particularly as the self was experienced in day-
to-day life. Encountering a drastically changed body stimulated uncertainty and challenged
processes of identity-formation that had begun long before injury. In some cases, they also
promoted dissociations of mind, body, and identity, and they inhibited action when one could not
imagine alternating ways of engaging in the physical and social worlds.
The extent to which experiences of the body impacted identity and engagement after SCI
was remarkable. Loss of orientation, and overall coherence with self and activity in day-to-day
life is a critical concern given the significance of this developmental period for pursuit of stable
roles and responsibilities in adulthood (e.g. career, family). AYAs and their caregivers in this
study were faced with significant challenges when working to reconcile identities with bodies
and interests after SCI. It was important for AYAs to experience success in activities,
particularly the seemingly ordinary or mundane “little things,” during rehabilitation and in
community life in order to support positive adjustment to changed bodies. In some cases,
caregivers became gatekeepers – responsible for promoting the health and well-being of the
AYAs, planning and grading activities for successful completion, and working to limit the pain
that came with failed attempts. Such roles required great energy and planning, sometimes at the
expense of independent interests or needs.
Furthermore, lived experiences highlighted challenges felt with limited support and
opportunities to re-engage in physical and social worlds. The loss of volitional movements
stripped AYAs of confidence they once had in feeling their bodies were well-suited to navigate
their environments. Among the cohort of AYAs, recuperation of skills for walking was a
common goal after SCI, but narratives revealed that walking was generally a proxy for
engagement and execution of habits in day-to-day life.
Becker (1997) has described ways in which individuals become intensely focused on the
body in the midst of serious illness, and lived experiences in this study further indicated how the
focus extended to the body’s alignment to the world – from “little things” to relationships. This
work enriches previous studies indicating challenges for understanding one’s self, body, and
possibility after SCI; indeed, what was once taken for granted can become the focus of prolonged
struggle, as when weeks, months, and even years of therapy are dedicated to regaining strength
for moving one’s arm again in order to interact with the environment, including expression of the
self through movement, or satisfaction of needs, like lifting a cup of water to drink.
Murphy (1987) synthesized the work of philosopher Merleau-Ponty (originally published
in 1962, translated by Smith in 1996) to say the “starting point for our apprehension and
construction of the world is the body” (p.99). The body is one’s source of being – a foundation
for understanding the world and engaging within it. Embodied experiences shape knowledge,
perception, and sense of location in social and historical contexts. However, when the mind
desires interaction with the world in a way the body cannot execute, this inevitably cultivates
intense reactions of frustration, anger, loss, and even trauma that disrupts one’s ability to
understand the self and the world. The frequency with which narratives were incomplete or
broken is perhaps an indication of pervasive trauma, manifesting in day-to-day experiences
among the cohort.
Narratives are a powerful way to understand one’s experiences of the body and the ways
he or she perceives place in society (Becker, 1997). Narrative structures can be a source of
understanding, a strategy to align present experience with past and future (Becker, 1997;
Mattingly, 2010). However, narrative can break down in cases of extreme trauma or
disorientation (Becker, 1997; Kirmayer, 2000). Frank (2013) describes listening to voices of
individuals who are suffering as a “fundamental moral act” (p.25). In the midst of illness or
disability, stories may be difficult to locate, they may lack clarity, and even invoke pain. Stories
can be hard to hear, but they also speak truth to the significance of embodied experiences, from
which we all can learn (Frank, 2010, 2013).
With the expression of lived experience through stories, the phenomenological lens is
also valuable – a means to staying close to experiences as they have been perceived by actors.
Narratives here, interpreted with a phenomenological approach, revealed that even when
individuals were able to look past incoherence of experience and ideas of self, social responses
had great significance – in cases when friends, families, communities adjusted to minimize
disruptions for AYAs, individuals remained engaged and could imagine future selves; when kin
were less present or supportive, AYAs appeared to experience decreased confidence and
motivation. Changed bodies contributed to changed interactions in social worlds. When recalling
life before SCI, AYAs shared stories where they felt in control of their bodies and were able to
independently interact with their environments. Life after injury was more difficult to understand
or articulate, and there was tension between past and present identities that blurred ideas of
future. In daily life, AYAs attempted to reinvent themselves, find activities that generated sense
of purpose, pleasure, and accomplishment, but AYAs also simultaneously struggled to
understand how to interact with their environments in changed bodies.
While it appears obvious in hindsight, this study was not initially focused on sensations
of the body. The conceptual framing of lived experience included the body, but it was not
privileged in interviews or observations. However, the narrative process and phenomenological
analysis shifted focus to the body as the initial source of experience, which then impacted sense
of self and identity. Thus, data supported this analytic gaze, even though it was not the initial
focus. Here, narrative value is underlined in its ability to emphasize predominant issues
perceived by those having an experience, which in this case pointed to the level of the body.
While there was great variability among experiences in this cohort of AYAs, this
narrative and phenomenological exploration of adjusting to life after injury revealed significant
transformations occurring as a result of changed bodies. Findings here demonstrate that early
stages of coping and adaptation were concentrated on reacquainting with oneself; AYAs must
focus on understanding the body, how it will function in the world, and realign experiences with
ideas about possibility in order to support development. Alternatively, AYAs may work to
dissociate their minds from bodies, creating challenging dichotomies for everyday engagement.
As such, rehabilitation is a developmental endeavor, where work must support identity
exploration alongside functional remediation or compensation.
Chapter 5: Multiple Perspectives
Using multiple perspectives to understand experience:
Caregiving as an exemplar
In a study of day-to-day life of adolescents and young adults with a spinal cord injury and
their caregivers, data revealed interpersonal dynamics that deeply affected individual experiences
and actions. Findings specific to roles and responsibilities of caregivers expand on existing
knowledge of this phenomena, and the study warrants methodological consideration for how
lived experiences were captured from multiple perspectives. Therefore, the purpose of this paper
is to use original research findings relating to how caregiving is practiced and experienced in
order to facilitate a discussion on research designs in occupational science.
Significance of Experiences
Experiences are central to life, multidimensional, and impactful, including their effects on
learning and development (e.g. Elder, 1998; Fox et al., 2010; Lave & Wenger, 1991; Vygotsky,
1978; Wood et al., 1976; Zeanah, 2009), and their strong links to health and well-being (e.g.
Hammell, 2014; Wilcock, 2005, 2007). Experiences are also at the root of occupations, where
meaning is felt. As such, experiences are an important focus in research – to be understood
and/or influenced. However, their complexity makes them a difficult subject of study.
Experiences, including the sensations and perceptions of a moment or occupation, have
been a focus of scientists and humanists across time, as well as to people living and engaged in
everyday social worlds. Experiences are ubiquitous, multifaceted, highly heterogeneous in their
representations, and susceptible to revision and transformation under reflection and over time.
Interpretations of experiences are also deeply situated within social, physical, and historical
contexts, which can subsequently influence action. Individuals act within mediating
environments that are largely impacted by others, who share common spaces, times, or histories
(Bruner, 1990a; Dickie et al., 2006; Iwama, 2003; Lawlor, 2003b; Rapp & Ginsburg, 2011;
At a neurological level, perceptions and memories are wired by experience. The world is
felt sensorially; stimuli invoke action (a learned or autonomic response) and shape the
architecture of the brain and its associated functions, which then become part of the mechanism
through which future experiences are processed (Damasio, 2010). Mental schemas, developed
through experience, are filters for engagement, and they direct conscious and unconscious
dynamics of interactions, like the initiation of a smile for welcomed news, or a fleeting gaze in a
tense conversation. Such features can also represent vitality of experiences, which are highly
subjective and contribute to new memories (Stern, 2010). In these ways, individuals act, at least
in part, in response to internalized representations of experience that continuously feed evolving
cognitive frameworks. Actions also affect the environment and perceptions of experience as they
unfold, thus contributing to their dynamic and contingent nature (A. L. Strauss, 2011).
We hold knowledge in our bodies, and embodied understandings of our lived experiences
ground our engagements in the world. Significant disruptions to one’s sense of one’s body, such
as that which occurs following trauma or the acquisition of a disability, can be profoundly
dislocating and disruptive to the intersubjective processes that form the foundation for such joint
actions as caregiving. Although there have been some phenomenological approaches to
examining these transformations in embodied senses of self (Boyles, 2017; Leder, 1990),
somewhat less attention has been paid to how understandings of caregivers or other social
interactants are cultivated when bodies do not act in familiar, expected, or predictable ways.
Such embodied understandings are situated in broader sociocultural contexts related to power
(Buch, 2013), cultural framings of disability (McDermott & Varenne, 1995), notions of
difference (Daley & Weisner, 2003), and empathy (Hollan, 2012). The imperative to understand
another’s experience is the ground for human connectedness, a pillar of relationships, and a
prerequisite for engaging in coordinated actions and joint endeavors. Understanding how
something is experienced can also unveil mechanisms of response to be manipulated for
intervention (e.g. J. Jackson et al., 2010; Padgett, 2012).
Much has been written about the tight coupling of experience, narrative, and self-
construction (e.g. Bruner, 1997; P. J. Miller, Potts, Fung, Hoogstra, & Mintz, 1990; Neimeyer,
2000). Narratives are constituted through interpretations and representations of experiences. As
Ricouer (1983) and others have described, narratives have a three-fold present, in which the
present incorporates both the past and future. Experiences of past and present inform knowledge
and ideas of future possibilities, thereby driving actions towards anticipation of imagined
prospects (Mattingly, 1994, 2010). Mattingly (2010) states:
As everyday actors, we locate ourselves in unfolding stories that inform our
commitments about what is possible and desirable, our narrative anticipations and
judgments about how things should and will unfold, and an understanding of the motives
and actions of our interlocutors. (p. 43)
There is a parallel structure in both narratives and self-construction (Bruner, 1990b), a theme
taken up analytically through a variety of constructs including autobiography, memory,
development, emplotment, and psychoanalysis. As Damasio (2010) has argued, “The self comes
to mind in the form of images, relentlessly telling a story of such engagements.” (p.216).
Enduring interest in experience (Throop, 2003) is evident in multiple disciplinary-
specific approaches (e.g., anthropology, philosophy, neuroscience, psychology), which focus on
varying aspects or representations of what is done and felt. Diversity in conceptual frameworks
is a strength and challenge for understanding and articulating experiences. Further, given the
breadth and fluidity of factors that shape experiences, there is rarely, if ever, a scenario when
something is felt, understood, or formed into the same narrative by two or more people,
particularly when the experience is examined at a granular level.
Shared experiences (M. Jackson, 1998) reflect something people have felt together, but
this does not mean perspectives from such experiences are also shared. In fact, presuming that
perspectives from shared experiences differ among actors was an underlying assumption of this
work. Still, when individuals do and experience with others, it can be difficult to discern where
one perspective ends and the other begins. One person’s perspective can be so deeply entrenched
in the knowledge and experiences of others that it is impossible to understand a single person’s
perspective without also considering the perspectives of those around him or her; such cases call
for inclusion and examination of multiple perspectives, which we argue can strengthen data and
their ability to reflect the complexity of lived experiences.
The subjective nature of representing experience, although sometimes erroneously
characterized as a limitation, is a lynchpin to accessing and understanding phenomena felt in
vivo since representations, such as those in narrative form, motivate action and highlight
dimensions of experience (Bonsall, 2012). Increasing emphasis on the situated nature of
experience calls for transcending individual frameworks in order to capture social contexts
(Dickie et al., 2006), although as some scholars in occupational science have noted, there are
opportunities for attending to both with approaches including critical narrative inquiry (Gerlach,
Teachman, Laliberte-Rudman, Aldrich, & Huot, 2018; Laliberte-Rudman & Aldrich, 2017).
Here, we suggest that engaging perspectives of more than one actor in a phenomenon can be a
valuable strategy for working across spectrums of individual to social contexts.
To raise a discussion of multi-perspective study designs, we present excerpts here from a
study of lived experiences among individuals with a spinal cord injury (SCI) and their caregivers
in which multiple perspectives were elicited to strengthen data representing experience. The
study was designed to garner perspectives of adolescents and young adults (AYAs) living with
SCIs, and given the relatedness of daily activities, caregivers of the participants with SCIs were
also engaged in the research. Many individuals with a SCI routinely depend on caregivers for a
variety of needs. As such, caregivers share space and time with individuals they assist, but the
intimacy of such relationships can extend well beyond shared physical and temporal contexts.
Research design and methods.
As the primary method of study, participants were individually interviewed with a
narrative approach in their homes, hospitals, or communities. Then, participants were invited to a
two-part series of group interviews, where collective narratives (Jacobs et al., 2011; Lawlor &
Mattingly, 2001; Mattingly et al., 2002) were generated from probes related to daily life,
experiences surrounding SCI (e.g. hospitalizations and transitions to community life), and
anticipated futures or goals for themselves and their kin communities (most often families and
close friends or loved ones). To identify tacit dimensions of experience, a subset of participants
was also observed during an activity of their choice (e.g. traveling to therapy, eating, grooming).
Interviews were audio recorded and transcribed verbatim for content and narrative analysis
(Denzin & Lincoln, 1994; Riessman, 1993) within- and across-cases to unpack common and
distinct dimensions of experiences among the cohort.
Approval for the study was obtained from all research sites. The principal investigator
(PI) conducted all interviews and data analysis as part of her doctoral research under advisement,
and with participation of her advisor. For privacy and confidentiality, the names of research sites
have been omitted. Names of participants mentioned hereafter are pseudonyms, and details of the
case examples have been changed or omitted when irrelevant to the analysis.
Recruitment and sampling.
Participants were recruited from rehabilitation hospitals, community organizations, and
through professional networks of the PI. A combination of convenience and purposive sampling
strategies (Padgett, 2012) were used to capture a range of individual circumstances while also
maximizing efficiency of recruitment. In total, 17 individuals enrolled: nine AYAs and eight of
their caregivers. The AYAs (n=9) were predominantly male (n=7) and ranged in ages from 17-22
years. They were diverse in times since injury, mechanisms of injury, race and ethnicities, and
socioeconomic status, as revealed through narrative self-report during interviews. (See Table 4
for a description of the AYA sample.)
Caregivers (n=8) were all female and previously known to the AYAs. Six of the
caregivers were mothers of the AYAs, and two were significant others (one spouse and one
girlfriend). Specific demographic data was not collected for caregivers, but descriptions in
narrative interviews indicated ages spanning from approximately 20 years to 55, with varying
amounts of educational achievement (at least one reporting that she never graduated from high
school and another having graduated from college). Similar to the AYA cohort, the caregivers
were diverse in race and ethnicities, and they lived in a variety of neighborhoods with differing
levels of family income and safety in their communities.
- Description of AYA Cohort
Total (n=9) n or mean n
Age (in years) 19.3 (SD 1.7) Gender:
Time Since Injury (in months) 20.2 (SD 19.3) • Male 7
Mechanism of Injury: • Female 2
• Sport 2 Race/Ethnicity:
• Fall 1 • White 2
• Medical 1 • Black 2
• Violence (gunshot) 5* • Latino 3
Level of Injury: • Asian 1
• C1 – 4 1 • Undisclosed 1
• C5 – 8 4 Primary Caregiver:
• T1 – S5 4 • Parent (mother) 7
Complete Injury 7 • Committed Partner 2
Note: Participant characteristics were collected through self-report during interviews. Severity was not reported
by ASIA Impairment Scale; participants independently qualified their injuries as “complete” or “incomplete.”
*Exact etiology of 1 injury unknown; onset of SCI coincided with gunshot wounds and medical complications.
Looking within- and across-cases, some significant findings emerged in the examination
of caregiving. Primarily, there was a wide range of day-to-day caregiving practices and
experiences described across the cohort. Many AYAs and caregivers discussed “little things” in
daily life, like when AYAs required assistance to sweep hair out of their faces, scratch their
noses, shift their postures, or get a drink of water. As one 19-year-old with tetraplegia stated:
Anywhere from feeding to “get this water.” “Can you hand me the remote?” Simple
things. “Can we adjust my positioning in my chair?” And then obviously… “Take me to
Tables 3 (p.104), 4 (p.140), and 5 (p.164) are identical but duplicated across findings chapters for ease of review.
therapy.” … Those were the main things. But it's the little things that- unfortunately, I
was so needy… I was barely strong enough to reach my face with my hands, so, “Can
you itch my face?” type of thing. It was all- it was little things.
Many other responsibilities scaled up from there, requiring significant expenditures of time
and/or energy to complete complex or multi-step tasks, like bathing, coordination of care, and
transportation in the community.
As AYAs and their caregivers gained greater knowledge of the AYAs’ bodies and
preferences, much of the day could be planned around anticipated needs, but narratives also
revealed ways in which responsibilities varied from being predictable and routine, to emerging
and dynamic in daily life. Alonso, a 21-year-old with paraplegia said, “Like, if my chair rolled
down the hall, you know, I can't get it. I'm not going to, you know, drag myself.” Many
caregiving responsibilities were goal-oriented and task-specific, like managing the body and
performing activities of daily living. However, a large part of caregiving practices were less
tangible or discrete. Caregivers provided emotional support for coping and adaptation to
disability after injury, and they facilitated participation in a range of activities (formal and
informal). Furthermore, caregiving practices included developmental work, including efforts to
help AYAs cultivate a positive sense of self after their injuries, to imagine future possibilities in
changed bodies, and to achieve age-appropriate goals like dating, social participation among
peers, and greater independence in housing and occupational pursuits.
Implications for caregivers.
Diverse and encompassing responsibilities assumed by caregivers indicated some
inherent implications of caregiving experiences for care providers. First, caregivers rarely spent
time alone, and even when they did, narratives revealed ways in which mental energy was
devoted to AYAs, even from a distance. As one caregiver was describing challenges since her
son began working primarily with professional care assistants, she said, “You know, I hold my
breath every weekend going, okay, please let everybody show up that needs to be [there].”
Similarly, another caregiver elaborated on how time with her friends has been impacted by
caregiving responsibilities, saying: “While I'm at the party, [the] only thing I'm going to be doing
is thinking about [my loved one with a SCI] and if he's okay, if he's getting everything that he
Furthermore, the extent to which actions were completed in tandem required AYAs and
caregivers to negotiate their own interests and needs with one another in a given moment. This
compromised each person’s abilities to fully express their personal values, preferences, and to
ultimately experience autonomy. As one young woman with a SCI stated, “[It takes]
compromising on both ends. Like, I can't do some things, and then [my mom would] have to
give up some of her things that she wants to do.”
Many examples were shared of moments when caregivers gave up control in a particular
moment to accommodate AYAs’ needs, like when they had to leave a gathering with friends or
walk away from a work assignment to respond to an AYA’s needs. This was particularly difficult
for unanticipated (even “little”) needs that accumulated in day-to-day life. As control was
sacrificed, experiences and their meanings changed for the caregivers. Over time, practices and
responsibilities assumed by caregivers impacted the caregivers’ identities and developmental
trajectories. While caregivers who were also mothers of the AYAs had always had caregiving
responsibilities for their children, responsibilities of care related to impacts of SCIs pushed
caregiving into the forefront of their lives at a time when the AYAs had otherwise been gaining
independence and the caregivers had been focused on their own goals. The sudden increase in
caregiving responsibilities generated a widening gap between experiences of these dyads and
their peers, who were not impacted by disability; as the AYAs became older, significant
caregiver involvement in self-care and other responsibilities became more abnormal, especially
for mother-child partnerships. For example, it was difficult for mothers to be involved in bathing
their young adult sons, and both the sons and mothers spoke about their reservations for such
Responsibilities of care associated with SCI also took time and attention away from other
activities and interests, as is reflected in the following excerpt, where one AYA’s mother and
caregiver recounted how her marital relationship was impacted by the new or altered needs of
Personally, it was probably my relationship with my husband, because we were just- we
were just caregivers, full-time, all day, every day. So, it got to a point where- I mean, we
were fine. We're parents. That's what you do. You know, you kick in gear and you do
what you have to do for your kid. But… I could tell it was taking a toll on [my husband],
you know, because I think a woman handles it different than a man. So, I was fortunate
enough to have my mom and just my brother, just a support system that my mom came
and stayed with [my son] this past September while me and my husband went away [for]
four days just to break completely away. Of course, I thought about him. Of course, I
called and checked. But he was okay enough for me to leave him.
In this way, changed dynamics with her son also indicated changes to family life and the time
and attention she had available to share with her husband and their other child.
Another mother and caregiver to an AYA in the study shared that she had experienced
homelessness in early adulthood and spent much of her life trying to escape poverty, violence,
and systematic discrimination. In a reflection on the challenges of her son’s SCI, she said, “I was
putting me back together before all this happened.” She then went on to explain ways in which
she had to carefully balance her personal needs with her son’s in order to protect things she had
worked hard to achieve, including stable employment and affordable housing in a community
where she felt safe. Ultimately, feelings of vulnerability were pervasive across dyads, and mutual
concern and dependence meant they shared risks and felt challenges together.
Multiple perspectives generated a more comprehensive picture of ways in which
caregiving is practiced and experienced in day-to-day life, including decisions for what
assistance is provided, and also, what assistance is denied. To further facilitate a discussion of
value-added from multiple perspectives and some accompanying challenges in research designs,
we will look more closely at data within participant dyads. Narrative and observational data
revealed nuanced practices and responsibilities of caregiving for AYAs with SCIs, and the
integration of perspectives from caregivers and the AYAs themselves deepened understandings
of lived experiences.
Gordon and Gina.
One case involved Gordon, a 20-year-old, who acquired a cervical SCI approximately
three years prior to enrollment, and his primary caregiver, Gina, whose relationship as his
girlfriend pre-dated Gordon’s injury. During research encounters, Gordon was asked to talk
about things he needed help with during the day and how he worked with his caregiver at home.
Rooted in the narrative approach, we asked for specific stories, but he typically spoke in a more
generalized way about his experiences. In one interview he said, “I kind of be needing help with
a lot of things, so it be seeming like I'm just asking [Gina] to do stuff back-to-back, back-to-
back.” Field notes from research encounters reflect several occasions when interviews were
interrupted to attend to his needs, such as a time when he called Gina into a group interview to
apply lip balm, or instances during individual interviews when he needed assistance for bladder
care or environmental comforts, like having a fan turned off. Reflecting more specifically on an
experience of asking for help, he alluded to the intensity of his needs and the burden he felt
asking for help, “And I could just tell, the look on [Gina’s] face would be like, ‘Damn, can I get
a break?’ But it's like... sometimes I'll just be needing stuff right then and there.”
Spinal cord injuries can have devastating effects on the body, and as such, individuals
may require around-the-clock support. High levels of attendant care are especially common for
individuals like Gordon with injuries to their cervical spine, since their paralysis is more
expansive (Fougeyrollas & Noreau, 2000; Weitzenkamp et al., 2002). Gordon’s data seems to
confirm such dependence, and his narrative exposes related feelings of vulnerability during
routine experiences. From Gordon’s perspective, we learn that needs were significant and
pervasive in day-to-day life, and there was tension between feeling like a burden and addressing
his personal interests or needs of his body. These demands may contribute to caregiver fatigue
and resistance, as suggested by the ways in which Gordon interpreted Gina’s non-verbal
responses to requests for assistance (i.e. giving a look as if to say, “Damn, can I get a break?”).
These were Gordon’s interpretations, rather than Gina’s experiences, but they speak to tension
felt in negotiations of care that can strain relationships.
Gina’s perspective illustrated another truth, which was that in addition to fatigue from
caregiving, she got frustrated when Gordon did not make greater efforts to be independent. As
his caregiver and someone who hoped to raise a family with him one day, she focused on
Gordon’s long-term, developmental goals. Describing challenges of caregiving, she said:
It’s also getting [him] to do the stuff on [his] own. It’s also hard doing that. Like with
Gordon, because he is a quad, he can’t move his hands, but they make accessible stuff for
him so that he can still do what he wants to do. So for a year straight, he could not feed
himself. I bought the [adapted] utensils for him to use. He was just lazy and was just so
used to everyone feeding him. So, I’m like, “Okay, look. When we have company, I’m
not going to feed you. So, you can take advantage of other people, but I’m not going to
do it.” So, now he gets to the point where he’s like, “Oh, you’re mad. You ain’t going to
feed me now?” “No, I’m not. So, you feed yourself today.” And then he just started doing
it every day. He’s like, “I don’t need you to feed me today. Give me my stuff. I can do it
… Everyone else, when the family comes around, they're like, “What are you
doing?” I'm like, “Leave him alone. If he's going to fall, let him fall. That way you'll see
if he can get back up or if he needs help to get back up.” You have to let him do stuff in
order for him to see if he can do it, because when he was [at] therapy, he was moving
around and all this. And then when he got home, he's just like, “I can't do it. I need help.”
The combination of perspectives revealed how home was a contested space for Gordon and
Gina. While it seemed Gordon used home as a place for rest, where he could feel safe,
comfortable, and cared for, Gina’s stories suggested ways in which she wanted home to be an
extension of the clinical space, where she had seen him develop skills for greater independence.
She wanted Gordon to continue to gain strength and function through doing activities in his
natural environment. She also wanted to envision a future where their lives would be filled with
activities – shared and individual – with devotion to family and community, rather than just to
one another in the care dyad. Her caregiving approach required calculated restraint, which
stressed their relationship and opened her to critique by friends and family, who did not think she
was doing enough to help him.
Gloria and Pharrell.
In some cases, there were even larger discrepancies in descriptions of caregiving
relationships and practices within-dyads. Pharrell was a 21-year-old man with a cervical-level
SCI. He lived in a different home than his mother, Gloria, who he identified as a primary
caregiver. While he had some hired assistance in his home, his mother was routinely involved in
providing physical, emotional, and developmental support, in person and from afar. However, an
argument resulted in several weeks of no communication. In her last interview for the study,
Gloria became emotional as she described ways her relationship with her son had been strained,
and she was devastated by knowledge of her son’s advanced pressure sore, which she had
recently discovered while helping him shower on a day they shared after resolving their
disagreement. She said:
I had to embrace my own self yesterday… First, I'm his mother, but I'm also his advocate,
so I had to be the advocate part in order to endure what I saw on my son's body. It looks
like an eating flesh disease. And to watch that, you know, you go- I went- I went through
a timeline from changing him to providing, and what I saw yesterday- [breaks with tears]
but I was able to perform a duty.
Gloria carried many burdens out of love and respect for her son. His well-being consumed her
thoughts, even when they were apart, and she navigated roles as a parent and advocate in order to
support his physical and emotional needs with the resources available to her.
Meanwhile, Pharrell reported things had been going well with his mother. He did not say
anything about a fight, and in fact, he indicated the two were close and speaking regularly. In
spite of being open about many other aspects of his life and daily needs, he also never mentioned
anything about a pressure ulcer in his interviews. However, in a field note, the PI mentioned a
smell in his home, which was reminiscent of her clinical experiences with wound care. Given
apparent evidence, it was curious that such significant issues were not part of his updates, but a
commitment to privacy among dyads (ensuring stories would never be repeated to others in the
study, including to their loved ones) inhibited specific probes. This presented analytic challenges
to determine how to make sense of gaps in Pharrell’s story alongside details in his mother’s.
Calvin and Carrie.
Perspectives of AYAs and caregivers from shared experiences also presented
opportunities to analyze stories repeated within dyads. Calvin was a 17-year-old with paraplegia,
and his mother Carrie was his primary caregiver. Carrie was present and engaged throughout
Calvin’s hospital stays in acute care and rehabilitation, and in each of their separate interviews,
Calvin and Carrie described the first time they met another person with a SCI, a peer mentor at
the hospital. Their individual perspectives illustrate how a shared experience can be felt and
represented in very different ways.
Hearing the story from Calvin first, it sounded difficult. This was the first time Calvin
remembered meeting someone else with a SCI, and he stumbled to put his experience into words:
Honestly, it was- the thing I remember was feeling kind of weird the way- just maybe me
being new to- and maybe my age, I felt like the way he was talking to me, I felt weird
being- it felt like an initiation into like a group or something. I almost felt like… like I
think he called me his “brother” now or something. And at first, that was really weird. I
felt like funny, like I joined some group. But I don't know, it might have just been the
way he was talking that day, or whatever. But yeah, that's the only thing I remember from
Calvin met a stranger, who said they were “brothers” because they both had a SCI, but Calvin
had a hard time understanding the assumed relationship since, to him, it seemed they had little in
common. At the time, Calvin had not enfolded his injury into his identity in the way his visitor
had, and so he found it “weird” for this person to feign a closeness. His initial resistance aligns
with existing literature describing how disability identities may be context-dependent and take on
a range of meanings for different people (Barnes & Mercer, 2001; Isaksson & Prellwitz, 2010;
Papadimitriou, 2008; Yoshida, 1993).
From her perspective as a mother and caregiver, Carrie remembers the visit more
positively. The story came up for her when she was reflecting on assistance that she and her
family received when they were first adjusting to Calvin’s injury:
I became such an expert in the hospital, but while we were [there], a gentleman from [the
community organization] came, and he is a huge resource of information. He is- anything
you can think- like medical supplies at home- “You're just using what the hospital has
used since day one. Well, now you have to go home, and you need to have your own
stuff, and what's going to work for you? What's going to work for him?” … and you don't
know… So, it was great to have [him] as someone who is a quadriplegic and has lived
that and learned because we had hundreds of questions, and he- I could call him, I could
text him. He was huge.
Carrie continued to elaborate with examples of various suggestions this man provided them,
from ideas for Calvin’s wheelchair to catheter styles, and from this, Carrie called him “a saving
grace.” Unlike Calvin, she never alluded to feeling strange or uncomfortable about the meeting.
Instead, she found him to be a source of information, assuming his lived experiences could
inform decisions she and her family would need to make in the coming months. This example
indicates the variance of perspectives coming from shared experiences and ways individual
actors are situated. Multiple perspectives, here from AYAs and their caregivers, strengthen
understandings of a discrete time or experience and bring to light a multitude of factors that
shape experiences as they are felt and assembled into narratives.
Multiple perspectives in the data corpus allowed for thick descriptions (Geertz, 1973) of
caregiving. Stories of shared experiences, as well as gaps within narrative representations,
provided new insights into the phenomena, including realities of interdependence (Elder, 1998)
and intersubjectivity (M. Jackson, 1998; Tronick, 2007) among caregivers and AYAs in day-to-
day life. Therefore, multiple sources or informants were necessary to identify influences of
relevant perspectives and actions.
In the case excerpts provided, multiple perspectives captured a range of responsibilities
associated with caregiving. Primarily, combining data of AYAs and their caregivers revealed
roles and responsibilities of caregiving that exceeded their individual reflections. This can be
explained by narrative theory, which argues how noteworthy experiences naturally emerge
through storytelling. Likely, individuals focused on unique aspects of caregiving – as recipients
or providers of care – that felt especially challenging, burdensome, rewarding, or unexpected,
and thus surfaced in individual stories. Individual experiences were unique, even when derived
from a shared experience; something that felt extreme for one person was apparently negligible
for the other, and therefore omitted from narratives. Common definitions of caregiving indicate
involvement of another person for activities that could not be otherwise completed
independently, but findings here ultimately illustrated extensive actions in daily life that were
extensions of relationships. Roles and responsibilities included fundamental relationships as
mothers or significant others, but shared activities extended beyond usual interactions to include
constant physical and emotional support for short- and long-term needs of AYAs. As such, time
and experiences were almost always related or shared within dyads, even when physical spaces
or activities varied.
Multiple perspectives also showed how meaning is cultivated based on individual
contexts. Perceptions from a shared experience can deviate significantly based on individual
circumstances and other influences. Perhaps, if dyads like Calvin and Carrie had described
experiences together, like their first encounter with the SCI peer mentor, they would have
“collaboratively reconstructed” (Garro, 2001 p.120) the shared experience with a narrative that
made sense to both parties, possibly even deviating from specifics in their individual reflections
in order to complement one another’s narrative. However, with the design of this study situating
each actor in separate interviews, Calvin and Carrie’s own stories revealed aspects of the shared
experience they remembered most clearly and how the event took on specific meanings in their
lives. For Calvin, it was the suggestion of a new identity association, something unexpected that
did not match what he knew about his body and his life up to that point. For Carrie, meeting
someone with personal experience of SCI generated a sense of relief; his knowledge was a
resource that eased concerns that come after a traumatic injury.
Across cases in the cohort, there was great variance among responsibilities, practices, and
experiences of caregiving. Dynamic and evolving biological, physical, social, and historical
contexts shaped individual experiences so that no two were alike (Bruner, 1990a; Wenger, 1998).
Additionally, there was fluidity within cases and within analytic units; experiences were not
universally good or bad, difficult or easy. In line with work of Frank (2010), there were no
“definitive” or “singular truth[s].” As such, categories of caregiving responsibilities and
experiences were problematic and required careful contextualization in individual narratives for
Gathering multiple perspectives is significant for studies of experience, but this approach
can also be valuable in health care settings. Multiple perspectives can inform how providers
approach family-centered care, along with home and community participation. In the case of
Gordon and Gina, these individuals had different ideas about the nature of their home – for
Gordon, home was a place to feel comfortable and cared for, a place to receive assistance when
and how he needed it from a trusted caregiver. For Gina, home was an extension of the clinic,
where Gordon could continue to practice and refine skills learned in therapy within their natural
environment. Knowing and understanding this difference in ideas could shape how providers
make recommendations for rehabilitation or chronic condition management.
Challenges and recommendations.
Caregiving is a phenomenon that engages multiple people in action, and multi-
perspective designs generate complex reflections of experience, which approach what is felt in
vivo. However, managing multiple, and often conflicting, perspectives can also be challenging.
For example, investigators must consider: How can we know the extent to which actions are
interrelated? And furthermore, how can an experience be shared but perceived quite differently?
Narratives from different perspectives of shared experiences can reveal how meaning is
assigned to experience in shifting landscapes and cannot be felt in the same way more than once.
Furthermore, the circumstances of re-telling must also be considered, including ways the
audience can influence a story. Taken together, there is no absolute truth, and all perspectives are
valid. Narratives represent a moment in time (Bruner, 1990a), captured and transcribed to be
analyzed as a narrow representation of that particular perspective within the context it was
generated or shared (Denzin & Lincoln, 1994). Therefore, the interpretation of narratives must
stay close to that without invalidating individual perspectives or searching for a singular truth.
Multiple perspectives complement individual narratives to reveal context that extends beyond an
individual to situated experiences. Such approaches can add rigor to qualitative studies by
contributing sources for analytic triangulation (Denzin & Lincoln, 1998a, 1998b) and compelling
researchers to question their own assumptions and interpretations of data, especially when
perspectives differ (Strauss & Corbin, 1994).
Such methodology can also impose significant burdens on researchers. When we examine
complex realities of experience, influences range from individual to social, from immediate and
intimate points of contact, such as spouses or children, to inter-generational arcs. As a result, it is
beyond possibility to purposefully integrate all consequential perspectives in a way that can be
managed within the constraints of one study. Furthermore, since reflections on experience have a
way of changing over time as individuals move through the world, it can be difficult to interpret
multiple perspectives around single phenomena. Practically, perspectives are usually garnered at
different points in time since it is extraordinarily difficult to capture perceptions about an
experience from more than one person at the same time unless in a group setting or when
multiple investigators are involved, which in itself can add variability to the reflexive narrative.
Therefore, data analysis must involve efforts to identify factors that influence reflections of
experience in a given encounter, including impacts of audience, time, and place. In summary,
researchers must be purposeful and explicit about the breadth and depth of study; parameters of
greatest interest or influence must be carefully considered and expressly stated.
Studies of experiences as phenomena are studies of sensations and assumptions as they
are felt within a particular moment or period of time and represented biologically, visually, or
verbally. Adding to the complexity of such research, experiences, and perceptions of
experiences, can change within a moment, a day, and certainly within months and years (Frank,
2010). Analysis of a static moment presents significant challenges for finding commonalities
across a cohort, when evaluation is likely to have occurred at varying points in time with changes
in context, but the burden of study is even greater for analysis of experiences in vivo.
Narratives of AYAs and their caregivers uniquely informed findings about caregiving
practices and experiences. Caregivers are of significant importance to AYAs with a SCI to
support anticipated and emergent needs relating to short- and long-term goals. However,
relationships were inherently complex, and shared experiences were felt differently based on
individual factors. Capturing the essence of caregiving experiences can be challenging since it
largely relies on personal reflections and necessarily involves an evaluation of physical and
social contexts. Multi-perspective designs address challenges to understanding experiences,
including their interpersonal, interdependent, and intersubjective natures, but they also present
significant burdens to researchers that must be managed carefully.
In studies of experience, multi-perspective designs complement narrative approaches,
which reveal a person’s dominant concerns or interests and shed light on perspectives generated
through experience. However, individual narratives only capture phenomena from a single
perspective and thus can over-simplify experience or suggest action is formulated within an
individual. Perspectives of multiple actors within experience shed light on broader social
interactions that mediate experience, including perceptions and actions, and they cultivate
understandings of real-world influences, which are complex and ever-changing. Multiple
perspectives generate a gestalt to better understand how trajectories may be affected in the real
world, like in the case of caregiving, where experiences are negotiated among multiple actors in
daily life. Therefore, this approach has broad utility to uncover substantive and dynamic
influences of context in the real world, which are critical to understand for research and health
care in order to support links between home, community, and clinic worlds that together
influence health and well-being.
CHAPTER 6: Participation
Participation after Spinal Cord Injury: Learning from
Lived Experiences of Adolescents and Young Adults in Community Life
An estimated 17,500 people in the United States acquire and survive a spinal cord injury
(SCI) each year, and approximately half of these individuals are aged between 16-30 years
(National Spinal Cord Injury Statistical Center, 2017). Acute periods following SCI involve
hospitalization for medical management and rehabilitative care, including neuromuscular re-
education, training for self-care skills, and adjustment to disability. Despite such expansive and
critical goals, durations of inpatient care for SCI survivors have reduced significantly under
restrictions of medical payment systems (Hauber, Jones, Temkin, Vesmarovich, & Phillips,
1999; National Spinal Cord Injury Statistical Center, 2016). From 1972 to 2016, the average time
spent in acute care for this population reduced by more than half from 24 to 11 days, and the
average time in inpatient rehabilitation dropped by over 60% from 98 to 35 days
Cord Injury Statistical Center, 2016). After inpatient care, over 85% of individuals with SCIs
return to a private residence, primarily their homes before injury
(National Spinal Cord Injury
Statistical Center, 2016), and they are living out their lives in communities, where they must
negotiate dynamic challenges of chronic self-management. Therefore, processes of recovery are
assumed to continue into community life. As such, it is critical to better understand daily life
experiences for SCI survivors in order to inform health and life care planning beyond traditional
structures of rehabilitation.
Treatment for damage to the spinal cord is improving, and life expectancies for SCI
survivors are increasing with advances in medical care. Still, most people experience chronic
impairments as a result of their SCI, including muscle paralysis, autonomic dysfunctions, and
secondary conditions that necessitate lifelong care (National Spinal Cord Injury Statistical
Center, 2016; Saunders et al., 2015). While considerable time and energy is spent facilitating
increased independence for SCI survivors, many people require long-term assistance for daily
activities (Harvey, Wilson, Greene, Berkowitz, & Stripling, 1992; National Spinal Cord Injury
Statistical Center, 2016; Post et al., 2005), which may specifically challenge feelings of
independence important to adolescents and young adults (AYAs) (Arnett, 2000; Bloom &
Joseph, 2003; Cook, 1985; Erikson, 1964b) who make up the highest proportion of SCI survivors
(National Spinal Cord Injury Statistical Center, 2016). To this end, the overarching objective of
this study was to explore daily life experiences after SCI for AYAs and their caregivers, with a
specific focus on understanding interrelationships of injury effects, participation, identity,
development, and quality of life. Specifically, findings presented here highlight findings to
describe experiences of participation, along with factors influencing opportunities and individual
experiences or perceptions.
A multi-phase, qualitative design was employed and organized for two phases of data
collection, which were separated by intensive data analysis (See Figure 2). Narrative and
phenomenological approaches were used to elicit particulars in day-to-day experiences from
stories and observations of lived experiences (Mattingly, 2010; Mattingly & Lawlor, 2000;
Padgett, 2012; Riessman, 1993) of AYAs with an acquired SCI and their caregivers.
The study was conducted in a diverse, metropolitan area of Southern California. With a
primary focus on community life, data were collected in participants’ homes and in other
community locations, according to preferences of participants. Some interviews were also
conducted at rehabilitation sites when it was possible and appropriate to capture experiences of
transitioning out of rehabilitation.
Recruitment and sampling.
AYAs were recruited using posted flyers, in-person meetings, and word-of-mouth
strategies from prominent rehabilitation hospitals (n=2), community organizations, and
professional networks of the Principal Investigator across Los Angeles County. When an AYA
expressed interest in participating, the PI met with him/her individually to discuss details of the
study and to explore whether the AYA had a caregiver whom he/she would like to also have
participate in the research. The AYAs were encouraged to choose caregivers who they worked
with most and whom they felt could speak about their day-to-day experiences after injury.
Meetings were subsequently arranged with caregivers to discuss the study and complete
Informed Consent. This staggered recruitment strategy was used whenever possible and
Aug 2015 – Jan 2016
• Individual Narrative Interview (1/participant)
• Group Narrative Interviews (2 for AYAs; 2 for caregivers)
July – Dec 2016
• Individual Interviews (2-4/AYA; 1-3/caregiver)
• Activity Observation (1-2/AYA)
Figure 2 - Research Design
appropriate to privilege AYA preferences for participation, including increased control over who
would represent aspects of their lives and experiences in the research.
AYAs were eligible to participate if they were aged between 15-22 years, had acquired a
non-progressive SCI within the previous five years, participated in an inpatient rehabilitation
program after injury, primarily used a wheelchair for mobility, lived at least part-time in Los
Angeles County, spoke English or Spanish, and had no other primary illnesses or cognitive
deficits that significantly influenced their day-to-day lives. Caregivers were eligible to participate
if they worked with an AYA who was also enrolled in the study and if they spoke English or
Spanish. AYAs and caregivers verified enrollment criteria by self-report.
Sampling for Phase I was done for phenomenal variation (Sandelowski, 1995) from a
convenience sample, based on assumptions that participants would have a range of individual
experiences with diverse ages, times since injuries, races or ethnicities, and caregiver
relationships. Gender was also considered, and enrollment achieved approximately 80 percent
male participants to match the population norms (National Spinal Cord Injury Statistical Center,
2016). However, population-level matching was not necessary since the analytic goal was to
generate thick descriptions (Geertz, 1973) of individual experiences, rather than to generalize
from probability sampling. Phase II sampling was purposive (Padgett, 2012) and guided by
iterative analysis of Phase I data; participants from “information-rich” cases (Patton, 1990)
whose data seemed particularly salient with the overarching research objectives and who
expressed interest and availability in ongoing participation were recruited for deeper research
Phase I enrollment targeted a minimum threshold of eight AYA participants, assuming a
majority of those participants would also include a caregiver match. Phase II enrollment aimed
for a subset of 3-5 dyads from Phase I. Goals for sample size were based on deliberations of
breadth and depth of experiential data and recommendations for what was practical and within
the scope of narrative and phenomenological studies (S. E. Baker & Edwards, 2012; Morse,
2000; Padgett, 2012; Sandelowski, 1995). Recruitment was stopped when enrollment surpassed
minimum targets by n=1 in order to support timely data collection while simultaneously
accounting for possible attrition.
Data collection in Phase I included an individual, narrative interview with each
participant followed by a series of group interviews, with two meetings for the cohort of AYAs
and two for the caregivers. Group interviews were organized to elicit collective narratives
(Jacobs et al., 2011; Lawlor & Mattingly, 2001), a process by which personal stories are told
among peers and woven together in the course of sharing to identify possible common and
distinct features of life after SCI for AYAs and their caregivers. Phase II data collection involved
additional narrative interviews completed individually with each participant (2-4 interviews per
AYA; 1-3 interviews per caregiver). In addition, observations were done with AYAs during a
meaningful and/or routine activity of their choice, and visual timelines of life events that were
deemed by AYAs to be significant to their present experiences were developed and reviewed
during their individual interviews. Each interview was audio recorded and transcribed verbatim
for coding done by hand and with NVivo11. Field notes were also recorded by the PI in writing
or audio throughout the study to track researcher bias, emerging themes, and contextual features
of research meetings and interviews.
Data were analyzed to understand individual experiences, as well as phenomena within
dyads and across the cohort to examine features of day-to-day experiences and potential
relationships with identity, development, and well-being. A codebook was developed following
strategies for chaptering
and organized code descriptions loosely based on recommendations by
MacQueen, McLellan, Kay, and Milstein (1998) for defining and updates codes in order to
promote consistency and applicability. Iterative analysis of individual and group interviews
prompted revisions to the codebook, which included categorical, thematic, and narrative
concepts. Narrative analysis focused specifically on personal stories to understand experiences
situated in dynamic physical, social, developmental, and temporal contexts (Mattingly, 2010;
Mattingly & Lawlor, 2000; Riessman, 1993). Themes were developed from concepts emerging
from lived experience and in conversation with theoretical literature. To examine the hypothesis
that SCI (and related effects of disability) can significantly impact developmental experiences for
AYAs, the life course theory (Elder, 1998) and transactional model of development (Sameroff,
2009b) were specifically applied as unique, complementary analytic frameworks. Furthermore,
the bioecological model of development (Bronfenbrenner, 1977) was used to conceptualize
layers of context in which lived experiences are situated, ranging from mesosystems like family
and communities, to social and temporal structures.
“Chaptering” was developed by Drs. Cheryl Mattingly and Mary Lawlor. It draws on structural elements of
narrative to explore representations of experiences. The process of chaptering reveals not only the narrative features
of text, but also through chunkings of meaningful segments or chapters, the sense making, moral dimensions, and
emic perspectives of meaning inherent in narrative text. These interpretive analyses are used in complementary and
contrasting ways with thematic coding to strengthen understandings of representations of experiences.
Considerations for ethics and rigor.
Approval for this study was received from the Institutional Review Board at the
University of Southern California Health Sciences Campus, as well as from corresponding
review boards at each participating hospital (site names redacted to protect anonymity of
Researcher characteristics, reflexivity.
Concerted efforts were made to observe experiences in context without significant bias
from the principal investigator (PI), including challenging researcher assumptions and involving
multiple researchers in data interpretation. However, some of the PI’s previous experiences as an
occupational therapist working with this patient population in an inpatient rehabilitation setting
informed her understanding of injury effects and dynamics in rehabilitation. The study was
completed in partial fulfillment of the PI’s degree requirements for a PhD in Occupational
Science at the University of Southern California. Her research training has focused on qualitative
and participatory research methodologies for use with individuals with physical disabilities
and/or chronic health conditions in rehabilitation and community-based settings. Her academic
studies have included multi-disciplinary training in fields of occupational therapy and
occupational science, social work, anthropology, public health, and psychology.
The PI was responsible for all aspects of research design and implementation, including
data collection and analysis. To enhance the rigor of study, triangulation of data (narratives from
individual interviews, group interviews, and observations) was applied to the design (Denzin &
Lincoln, 1994), and multiple perspectives relative to the phenomena (AYA, caregiver,
researcher) were considered (See Chapter 4). Additional researchers (Drs. Mary Lawlor and
Jesus Diaz) assisted with facilitation of group interviews and contributed to field notes in Phase I
of the study. During data analysis, multiple researchers were also intermittently involved in co-
coding and data interpretation to inform codebook development and interpretation of themes.
Data collected at various points in time, particularly for participants in Phases I and II who were
interviewed up to seven times over approximately one year, were checked for repetition of
stories, which were analyzed for consistency and evolving perspectives. Furthermore, narratives
were examined within dyads to identify points of convergence and divergence in individual
experiences. Once study themes were developed, data were re-examined to search for
disconfirming cases and to deepen analyses within- and across-cases.
Description of sample.
In total, seventeen individuals enrolled in Phase I of study: nine AYAs and eight of their
caregivers (one AYA declined to involve a caregiver in the study). According to the study
design, six of the participants (four AYAs, two caregivers) continued participation through Phase
II for a deeper exploration of experiences over time. The sample was diverse in ages, races and
ethnicities, mechanisms of injury, and time since injuries (see Table 5 for a description of the
AYA participants). Socioeconomic data were not collected, but narrative reports relating to
financial burdens, work roles, educational attainment, and residential communities also indicated
diverse socioeconomic circumstances. Although not criteria for enrollment, all caregivers were
female, of informal caregiver status, and they identified as mothers or committed partners
(girlfriends, spouses) of the AYAs with SCIs.
- Description of AYA Cohort
Total (n=9) n or mean n
Age (in years) 19.3 (SD 1.7) Gender:
Time Since Injury (in months) 20.2 (SD 19.3) • Male 7
Mechanism of Injury: • Female 2
• Sport 2 Race/Ethnicity:
• Fall 1 • White 2
• Medical 1 • Black 2
• Violence (gunshot) 5* • Latino 3
Level of Injury: • Asian 1
• C1 – 4 1 • Undisclosed 1
• C5 – 8 4 Primary Caregiver:
• T1 – S5 4 • Parent (mother) 7
Complete Injury 7 • Committed Partner 2
Note: Participant characteristics were collected through self-report during interviews. Severity was not reported
by ASIA Impairment Scale; participants independently qualified their injuries as “complete” or “incomplete.”
*Exact etiology of 1 injury unknown; onset of SCI coincided with gunshot wounds and medical complications.
Activity and participation.
In spite of some commonalities among participants in the AYA cohort (e.g. limited
geographic catchment, only five years of age between oldest to youngest, and all experiencing
SCIs within the previous five years with lasting impacts on motor function), the group was
remarkably diverse in individual characteristics – from race, ethnicity, and socioeconomic status,
to life experience, family structures, social support, personal character traits, interests, and
ambitions. Data from the heterogeneous sample revealed a variety of themes, which highlight
interrelationships among constructs of activity, participation, and development for AYAs with
SCIs and their caregivers.
First, a multi-faceted analysis revealed a wide range of activities consumed by AYAs in
day-to-day life following SCI. Typical to their ages and interests, several AYAs were exploring
Tables 3 (p.104), 4 (p.140), and 5 (p.164) are identical but duplicated across findings chapters for ease of review.
leisure, academic, and vocational opportunities while also largely focusing on friends and
romantic interests, including social activities like playing video games, watching television, and
going shopping or out to restaurants. Activities varied greatly from formal or organized (e.g.
school, work) to unstructured time, often social or leisure. Activities with limited structure were
particularly varied and took place in a range of locations, including private homes, sport or
recreation centers, parks, cars, and even outdoor spaces at hospitals. Largely, the general nature
and breadth of activities identified in participation data aligns with expectations for AYAs, but
there were some notable differences when looking at the quality and intensity of participation
Limited work experience.
Across accounts of AYAs in this study, there were limited discussions of work
experience, including time before and after injuries, and AYAs rarely mentioned having
household chores or related responsibilities in daily life after injury. In fact, caregivers more
commonly took over home management. Across the cohort, only two of the nine AYAs
mentioned having work experience before their injuries, but they had not engaged in work roles
since. Two other AYAs reported having formal work roles after their injuries, and they were
both approximately three years post-injury when they started working. Additionally, the AYAs
gained their positions through volunteer roles, which eventually translated to internships or paid
Gainful employment has been associated with educational achievements, community
mobility and integration, functional independence, and life satisfaction (C. J. Anderson & Vogel,
2002). Work is a means of generating one’s own income and contributing to society, and it is a
primary goal for individuals transitioning to adulthood. Likewise, participation in work roles is a
long-term goal of pediatric SCI rehabilitation (C. J. Anderson & Vogel, 2000a; Zebracki et al.,
2010), including the “developmental process” (C. J. Anderson & Vogel, 2000a, p. 174) of
preparing for adult employment. Therefore, participation in household chores or volunteering in
the community must be recognized for their value in preparing young people for adult work
roles. However, prior studies have shown, similar to findings here, that individuals with an onset
of SCI in childhood have few expectations for chores, limited volunteer experience or in part-
time work, and decreased rates of adult employment when compared to non-injured peers (C. J.
Anderson & Vogel, 2000a, 2000b, 2002).
More commonly, some informal work roles or related experiences were identified in
participant narratives, and they are important to note in consideration of these AYAs’ pursuits
towards independence. Attention to such roles was prompted by instances when AYAs
seemingly had access to money without reporting a formal work role. In these cases, AYAs
ostensibly earned money through alternative means, sometimes mentioning underground and/or
illegal practices done before and after their SCIs that generated income. However, since few
details were shared about exact circumstances, and the nature of these activities varied across
cases, I will borrow an economic term used broadly to capture unreported employment:
participation in “informal economies” (Feige, 1990), which in this context included activities
such as breeding a family dog to sell puppies, exchanging off-market technology devices for
money or other goods, and vaguely, being involved in more serious illicit sales or “street”
“Street” is used here to refer broadly to activities often associated with gang life, including gaining power by force
and earning money through sale of drugs or other illegal goods. In some cases, AYAs made specific references to
their involvement in gangs, but others did just the opposite – making a point to clarify they had no gang affiliation in
Onset of disability associated with SCI qualified all AYAs in the study for supplemental
security income (“SSI”), which is a federal program designed to support costs for basic needs
like housing and food (ORDP, n.d.). However, general reflections from individuals with
disabilities, including participants in this study, indicate that SSI is insufficient, especially given
high costs of living in Southern California and expenses for medical care and equipment or
supplies necessary to maintain health. Therefore, most participants desired additional income and
pursued such through formal work roles and/or informal economies.
Examining the roots of such practices is beyond the scope of this work, but participation
in informal economies has been linked to underemployment, poverty, and dense urban
environments (Daniels, 2004; Feige, 1990), which are applicable to the contexts in which the
subset of AYA participants injured by gunshot were living. Furthermore, such realities are also
common among individuals with disabilities, who experience disproportional rates of
unemployment across the country (Bureau of Labor Statistics, 2017). Thus, informal economies
are often cultivated from necessity and rely on resourcefulness.
Several data points specifically suggested AYAs found ways of supplementing disability
checks in order to make financial ends meet. For example, in one interview, an AYA described
how he relied on his social networks as a “bank system.” He remarked, “That [SSI] money be
gone the first week,” and so we continued:
CH: How do you get what you want or what you need right now?
spite of sharing some similar community spaces and cultural practices. Therefore, “street” life is meant to capture
practices of “gang life” without making assumptions about gang affiliations.
Pharrell: Uh, my mama and I- I got a lotta family members that don’t mind helping me.
My cousin, that's my dog. Uh, my girl, if- if I need it. A lot of people- I got a lot of
people in my family.
CH: Have there been times when you’ve had to worry about getting what you needed or
getting money you needed?
Pharrell: I got too many brothers, too many sisters. If I can’t get $100 out of one y’all,
what are y’all my brothers for? You know? But, yeah, no, I got a- I got a cool, uh, bank
system set up with them…. They know that- 'cause they know when I was on my feet, I
done gave them plenty of money, good or bad money, but I gave it to ‘em. Yeah, so,
pretty good with that.
It was unclear whether the AYA, Pharrell, was referring to his nuclear family when he said
“brothers” and “sisters,” or if he meant his friends. Across several interviews, he used the term
“brother” to describe close friends whom he interacted with in gangs or street life, but he also
maintained relationships with several biological family members, including his mother and two
older siblings. Regardless of the exact nature of these references, he regularly relied on social
networks established before his injury to supplement his income since he felt his SSI only
covered expenses in the first week after it was received each month. Prior gang involvement had
generated excessive income for him, which he used to help friends and family members, and by
his own descriptions, to support a particular lifestyle for himself with cars and designer clothes.
However, he lacked experiences with formal means of making and saving money, and he had
never needed to budget. Now, without the physical ability to continue his lifestyle of making
money in the streets, he relied on people he once supported to help with his expenses.
Another instance of engaging in underground work or having alternative sources of
income was revealed in the case of Alex, who was only 17 at the time of our first meeting, and
he had already been injured for three years. During our first interview, he described several large
purchases he had recently made, but he was reluctant to identify a source of income. He said:
Like a couple months ago- four months ago I had bought my [65”] TV, and then I had
bought the PlayStation 4, too, on the same day.
CH: Did you buy it?
CH: How did you save up?
Alex: I just saved it. Life savings. No, I'm just kidding.
CH: Were you working?
Alex: I wish I was.
After saying this, he remained quiet until I moved on to other questions. However, later in the
same interview, he alluded again to having some spending money. He said:
I bought me a phone, and I bought my little brother a phone, too. He was already about to
go to middle school, so I had to buy him a phone so he could get in contact with my
mom. When I was in middle school, I didn't have no phone. I was like, "You know what,
I'm going to get him a phone."
Without any known work roles, data analysis focused on other contextual cues to understand
how he had money for such purchases. Alex’s family lived in a low-income community, his
mother was not working, and in her own interviews, she reported having very little money or
resources. In fact, her first interview was delayed when she could not afford car repairs necessary
to drive to the place she had chosen to meet for the study. However, Alex somehow had money
to purchase a large television, a new gaming system, and cell phones for himself and his brother
– things he mentioned with pride.
Doing it the “right way.”
Previous research has identified several barriers to employment for individuals with SCI,
including lack of prior experience, but also transportation, accessibility, financial disincentives,
motivation, and medical complications (C. J. Anderson & Vogel, 2002; Gorzkowski et al., 2011).
Characteristics associated with more employment experience include less severe injuries,
younger ages at time of injury, and identifying as female (C. J. Anderson & Vogel, 2000b, 2002;
D. Anderson, Dumont, Azzaria, Le Bourdais, & Noreau, 2007). Furthermore, higher levels of
education are typically associated with increased employment rates among this population, with
exception of those with cervical-level injuries, who still experience underemployment in spite of
high educational achievement (C. J. Anderson & Vogel, 2002). Ultimately, although there have
been some consistent variables associated with return to work, there has also been significant
variability across studies of work experience for individuals with SCI, and this makes it difficult
to discern specific or consistent associations (D. Anderson et al., 2007). However, within present
findings, lack of exposure and experience negatively impacted initiatives towards employment or
related skill development.
Since gainful employment has been linked to independence and quality of life, and there
is evidence in this study of ways providing for self and others can offer a sense of purpose and
satisfaction, attention must be given to long-term goals of work and financial management.
However, with limited time in rehabilitation, AYAs had few opportunities to explore productive
roles with changed bodies, and, with some notable exceptions, there was seemingly little being
done in homes and communities to support the imaginations and explorations of AYAs with
acquired SCIs to take on new, formalized roles.
Prior experiences in school and other formal settings appeared to either support or
challenge AYAs’ initiatives and even their imaginations with regard to future productive roles.
The AYAs who had been focused on school and had formed some formal long-term career goals
prior to their injuries were able to articulate specific goals for how they would work and gain
financial independence as adults. Their ideas all required advanced educations (e.g. work in
medical field, engineering, and communications), and as such, they were each engaged in
By contrast, individuals who appeared to earn money through informal or illegitimate
means prior to their injuries had difficulty articulating opportunities to earn money and maintain
finances when they could not rely on their bodies to navigate the streets. When asked about ideas
for employment or what future careers might look like, several participants, whose only work
experiences related to street life, responded with sentiments like, “something that makes a lot of
money,” but they had few ideas about what such opportunities might be. While this was likely
true even before their injuries, they had never had to consider formal roles until their strength
and body functions were limited. Furthermore, some of their narratives indicated histories of
fractured education experiences, sometimes moving from one school to another for disciplinary
action or related measures prior to their injuries (See Figure 3 for an excerpt of one AYA’s
visual timeline, depicting attendance in at least seven different schools over a period of eight
years. He attributed the transfers primarily to his conduct.) For these AYAs, school was not a
place they had felt success, and therefore, it seemed difficult to positively engage in such
activities after their injuries. For example, there were three cases where AYAs verbalized in
several interviews that they had an intent to enroll in school, but they never followed through
over the course of their study involvement.
Figure 3 - Excerpt of Visual Timeline Depicting One AYA’s Education Experience
A lack of formal work experience or success in school prior to injuries also appeared to
play a challenging role in coordinating care and community re-entry after SCI. For example,
AYAs who had limited education and support in formal systems had difficulty understanding
and completing paperwork for financial benefits, housing, and even to schedule follow-up health
care. In a group interview, Alonso, an AYA who dropped out of high school to earn money for
his family prior to his SCI, remarked, “They make everything so difficult for you when you try
to do it the right way.” When asked to elaborate, other AYAs also contributed to the narrative,
including this AYA with a history of gang involvement, who said:
Before this, I was just thinking money, and not the right way. So, I mean, I'm trying to
better myself from now. Just let me see. Life is real, you feel me? This whole situation, I
was just living like, [pssh] no care in the world, shit. So, no, I think I've been through so
much, I think I deserve… better than what I was doing. So, why not go to school? Why? I
know I'm smart. Shit, I know I can do the work. I know I could become something
successful, shit. So, why not go to school instead of sitting around like I was doing? I
wasn't sitting around, but I wasn't doing any good, so I wouldn't want to go back to that.
So, I'm trying to move forward, go to school, become something. I can't say what I want
to become yet, but something, something successful and that pays good. So, yeah.
He spoke with frustration as he seemed to be convincing himself as much as others in the room
that he could do better than earning money the “wrong way.” However, over the year he was
enrolled in the study, he never acted on plans to get into school or to get a job; he could only
describe goals of being “successful” in something that “pays good” without ever articulating or
initiating an actionable path.
Participation in informal economies must be considered when supporting development of
work roles for AYAs since such lifestyles often rely on sophisticated social skills and
resourcefulness, but they can be hard skills to translate to life after injuries, when experiences of
surviving devastating injuries and having chronic disabilities motivate new ways of engaging in
the world. Without tools to thrive in school and other formal systems, these AYAs struggled to
coordinate their care, and they had difficulty turning away from past lifestyles they wanted to
leave behind. Like Alonso, who was motivated to find ways to provide for his family again but
said it was difficult to “do it the right way,” these AYAs needed specialized support and
guidance to translate past skills into more formal ways of engaging in work and other social
roles, especially as they transitioned to adulthood.
Introduction to health care.
The redistribution of time and energy to participation in health care and management of
the body was also a significant change from the AYAs’ lives before SCI, and this prominent
activity category further distinguished the cohort from their peers. For all participants, SCIs and
related sequelae presented as their first major introductions to health care, and therefore, life after
injuries included a steep learning curve for understanding health systems, recognizing changed
bodies (See Chapter 4), and navigating day-to-day life with new demands of the body.
Following their injuries, AYAs were immersed in acute care to address origins of injury
and any associated medical concerns. Then, transitions to rehabilitation shifted to focusing on
movement of the body and developing practices to maintain or promote health (e.g. routine
bowel and bladder care, skin care, and attention to autonomic dysfunctions). Ultimately,
returning to the community relied on implementing new knowledge and practices into familiar
environments. It also required dividing attention among desires to be independent, connect with
friends, and address chronic health needs, such as follow-up appointments for pain, infections, or
general check-ups with physiologists, urologists, and other specialists.
Participation in context.
Individual narratives of AYAs and their caregivers, observation field notes, and visual
timelines offered a deep appreciation of lived experiences for AYAs and their caregivers,
including not only the types of activities in which they engaged, but also the qualities of
engagement experiences. With a general sense of activities that consumed time and energy
among the cohort, analysis shifted to unpacking experiences of participation in dynamic contexts
of day-to-day life, including consideration of factors that impacted opportunities to- and
perceptions of engaging in activities. Furthermore, narrative analysis focused on the potential
significance of lived experiences in relation to overlapping goals of AYA development and SCI
Time use varied greatly across cases, based on personal habits or preferences, features of
individual environments, and demands of self-care. First, with respect to levels of activity, some
AYAs reported few activities in their daily lives, like one man with paraplegia, who had spent
much of his year on bed rest due to a complicated pressure ulcer. When asked what he would be
doing if not meeting with me at the hospital, he replied, “Laid up in the bed, playing a game on
my big ol' TV, that's what I would do.” He further described spending most of his time on any
given day in his bedroom, primarily lying in bed, where he would have meals delivered by his
mother or brothers, and he could comfortably watch television and play video games, which
were some of his favorite pastimes. Prior to the progression of his pressure sore, he described a
much different lifestyle that included being out in his community with friends and making some
attempts to attend school. However, even those activities were limited by secondary conditions
and demands of self-management, such as episodes of incontinence that commonly forced him to
leave school before his classes had ended.
In great contrast, other AYAs maintained very active lifestyles with robust social
engagements and participation in school or work. Jacob, a 19-year-old college student with
tetraplegia, was one whose narrative reflected a lot of activity. Here, he described his schedule
on the day we first met:
CH: Can you tell me about- well, let's pick today, can you tell me [about] your day today
Jacob: Yeah, well, today, I had a 9:30 conference call... So, I had to wake up two and a
half hours in advance to prepare myself for the day, do everything medically, shower, get
dressed, etcetera. So, that took two and a half hours, you know, get in bed, get out of bed,
get in bed, get out of bed [referring to his routine for bowel care, bathing, and dressing
with a caregiver]. Conference call. Went over to class at 10:45 for an 11:00 class, so I
could meet my friend who helps me in class, whether it's taking notes or getting my
computer, etcetera. So, I got over there early, met up with them, got seated, etcetera. In
class, throughout the day you've got to take care of the bladder, etcetera, so empty that
out, etcetera. Grabbed some lunch, found some friends that you can eat lunch with, so
that they can feed you. [And I’m] over here now. Yeah, it's something that obviously I
never would have thought of before I got injured, and all the assistance that people need.
But it's life.
In addition to his classes, Jacob had recently started a new internship and was very involved in a
club on campus, which met for activities most nights of the week. To keep up with it all, he had
to be diligent about his schedule and carefully coordinate assistance with a caregiver along with
friends and classmates as he went about his days. He elaborated on the effort required:
[The routine to get ready is] the biggest thing, you know, people are like, when you're
making plans [or] whatever, you've got a 10:00 class, you're not going to shower, so you
wake up at 9:50 and run to class. I'm up at 7:15, just so I can get there and not smell.
Jacob suggested that while his friends had the option of sleeping in before classes in order to
compensate for the late nights they shared, he had to be up early in order to make sure his bowel
and bladder care was complete and general hygiene attended to before he felt comfortable
leaving home. His personal care routine required a lot of time and meant he often sacrificed sleep
to take care of it all since his alternative would be to “smell” or to miss spending time with
friends at night.
The choice to sacrifice sleep in order to be socially active was common among AYAs.
Calvin was a 17-year-old with paraplegia, who filled his time with friends and physical exercises
when he was not at school or doing homework. He said:
I mean depending on what I do in the morning, by like 4:00[pm], I'm already up for 12
hours, so it's- and then I'm up till at least 10:00 or 11:00[pm], just finishing everything.
So, it's a lot, and it's kind of tiring. I mean it takes an hour to an hour and a half now to
get [ready], depending on when I shower. I mean it could just be an hour if I don't shower
in the morning, but I like to shower in the morning, so it turns into an hour and a half,
two hours, yeah.
With a prompt, he went on to describe his schedule on the particular day of this interview:
Okay, so today I woke up at 4:00 in the morning. And then it starts with bathroom. So, I
go to the bathroom, get in the shower. And by then, after that's all done, it's close to 6:00.
And then get dressed to leave to school. I'm actually there maybe a half an hour early, so
I'm kind of early. I just sit in the car until it's like ten minutes. And then- so I go to school
from 7:00 to 12:18. And then I left school, went to lunch with some friends. I came back
home. And now I'm here with you.
CH: So, do you like to just be early? Are you usually a punctual person?
Calvin: I just like to not get there, get out and go in the class. I actually kind of enjoy
sitting in the car, like I'm not someone who likes to do things fast, like too fast. I'm kind
of- I'd rather have time and do it a little bit slower, than just get there, get out of the car,
and be in class. And then my friends get there early, so they'll come in the car and sit, and
we'll just hang out for a good 20 minutes.
To have time to get ready in the morning, participate in school, spend time with friends, and do
strengthening exercises and homework at night, Calvin described a typical routine of waking up
around 4:00am and going to bed around 10 or 11:00pm, indicating that he regularly was in bed
for only 5-6 hours.
Given such willingness to sacrifice sleep, demands of the body and self-care seemed to
challenge participation, but self-care was not a consistent barrier to community participation in
and of itself. More broadly, tension arose from competing goals, such as spending time with
friends, or promoting personal development and well-being. Unique aspects of life functioned in
parallel, sometimes overlapping, and yet distinct rhythms.
To illustrate tensions from competing temporal rhythms that were felt in lived
experiences, we will attend to the aforementioned case example of Alex, who was hospitalized
for management of an advanced pressure ulcer. He was just 14 when his thoracic spine was
damaged from a gunshot wound, leaving him with paraplegia. Alex’s childhood had been quite
difficult. He lived in a community plagued by generations of injustice. His parents separated
when he was young, and his mother (who was also his primary caregiver enrolled in the study)
had a history of drug abuse. Alex’s father was in-and-out of prison, and from Alex’s reflections,
the two had a tenuous relationship. Accordingly, it seemed Alex had developed an independent
mind and strong personality to endure a lifetime of stress and instability. Alex and his older
brother (the oldest in the family) had a close relationship since they shared the same parents and
had experienced so much together. At the time of the study, Alex’s older brother was 19 and
expecting a baby, the first grandchild, with his girlfriend. He was also graduating from high
Anticipating his brother’s graduation and arrival of a baby was an exciting time for Alex
and his family. However, at the same time, Alex was hospitalized for treatment of an advanced-
stage pressure ulcer. As a result, Alex missed celebrating these important family events. His
He missed his brother's graduation. I know that killed him. It was killing me. The baby
shower, you know, like all that, it bothers me. It really, really bothers me. And everybody
says, "Well, you know, he's in the hospital; he's in a good place." Yeah, but you just don't
understand. That's his big bro. These are big things that are happening with him, and he's
not there; he's stuck.
… I didn't graduate from high school. I don't want that for my boys, so when my
baby graduated [Alex’s older brother], I was like, "Oh, my goodness!" But I couldn't be
so happy because Alex was here, you know?
School was a complicated construct for Alex and his family. Neither of Alex’s parents had
earned a high school or equivalent education, and Alex’s mother wanted her children to have
more opportunities. Alex’s older brother graduating from high school was a very proud moment,
yet a health crisis meant Alex could not be present to celebrate with his family. Acute demands
of treating his pressure ulcer were in tension with a family event that held significance across
Alex was also hoping to one-day graduate himself. However, Alex’s SCI and related
effects on his body challenged his own participation in school, like when he had to leave school
to manage incontinence. He also missed time in school for his hospitalization and rehabilitation,
a case of scabies, and at the time of the study, to be on bed rest for management of his pressure
ulcer. He said:
This year [was] supposed to be graduating year for me, but nope, I'm still in the ninth
CH: What has made it hard to get into the higher grades?
Alex: My situation. My situation- I mean it keeps me back from a lot of stuff. If
something happens, I got to stay home. I have accidents at school, stuff like that. It would
just be a never- it would never be a day where I could just be at school all day, like in
peace. There's always something happening, or something like that.
In spite of it being so difficult, Alex still wanted to be in school. He said:
… My mom's talking about home studies, have like a teacher come to the house or
something. I don't know, I just don't want to feel like I'm just caved in somewhere all day.
I got school here, and then I'm staying here at my house. I'd rather just go to school, do
what I have to do, and still be with friends and communicating with others… instead of
just being home caved in all day. That was never me. I was never a home person. [I’d]
always be out in the streets having fun or something- never be at home. Now that I'm in a
wheelchair, it's like I'm home all day.
School served a greater purpose than just being a place for education. School was an opportunity
to see friends, interact with others outside of his home, and to feel part of a community he could
be proud of. Without school, he feared isolation. He would also miss opportunities to be
impacted by mentors, like a teacher who had a positive influence on his life. In one interview, he
I mean I always have supportive teachers. My teacher, he was very supportive and
everything. I have a need of something, you know, I would call him, and he would come.
CH: Can you tell me about a time, like a specific time, that he really helped you?
Alex: Basically, [he] just helped me like school-wise, he would help me out at school.
He would really pay attention to me. He would always try to tell me right from wrong.
… Before I had got shot, he was going to take me… to go snowboarding with
him. Yeah, and then I had got shot. That's what hit him because me and him were
supposed to go snowboarding. After that- It hit him hard, too. Every time he would see
me, he would stop the class and he would just talk about me. It was crazy. Yeah, he
would start dropping tears inside class.
Alex had experienced mentorship and support from this teacher at school, which may have been
especially critical in the absence of a stable father figure and home environment.
To leave school for rehabilitation and then to be forced into home schooling would result
in a drastic change of settings at play in his life. Prior to his SCI, Alex was active in school and
his community, but effects of his injury and related conditions included diminished opportunities
for participation, learning, and growing. With persistent health challenges, he was faced with
impossible choices of caring for his body or participating in the community, and he could not
find a way to reconcile the two. As he took pause to care for his body, life continued around him:
his friends advanced grades, his brother graduated, and in time, he found himself years behind
his peers. Transitioning to home schooling might support his educational goals, but Alex seemed
to interpret such a transition as a failure, since he had already been held back by his
circumstances and now could not experience success outside the home. While home schooling
offered more consistent opportunities for academic participation, it also threatened Alex’s sense
of what might be possible for himself and his future, given all that he had experienced in his past
and present, and it was likely discouraging progress at a critical time in his life.
Another challenge identified in the tension of competing life rhythms related to
spontaneity. Specifically, loss of spontaneity emerged as a theme salient to managing risks and
having implications on social participation, along with pleasure, sense of autonomy, and overall
quality of life. As one AYA with a cervical-level injury said:
I like to stay at home, which is really bad, but I do go out. It's just- I'm not as spontaneous
as I used to be. And maybe that's just my personality, or I don't know if it has anything to
do with the injury. But I feel like I have to make plans before I do them, just to plan
around my, like, cath schedule, you know, everything like that. I can never just take off
and leave somewhere, you know? Like, how am I supposed to pee? Or how am I
supposed to do other things?
Spontaneity is considered a trademark behavior among young people, who typically act on
impulse due to immature cognitive development (Arain et al., 2013). Therefore, being unable to
act spontaneously distinguished these AYAs from non-disabled peers and conceivably made it
challenging for AYAs to align schedules and plans with non-disabled peers. Getting out of the
house required routines sometimes in excess of two hours, and minimally, careful consideration
of what to wear and bring along. Several participants described how they had to pack a range of
supplies for emergent needs, most commonly including layers of clothing to compensate for a
decreased ability to regulate body temperature, a change of pants in case of incontinence, and
supplies for intermittent catheterizing to empty the bladder (to “cath”). Therefore, AYAs
expressed how they could not leave home on a whim, as they had to carefully plan transportation
and schedules to overcome environmental barriers to accessibility and to ensure there would be
appropriate spaces to “cath” and perform other self-cares. As such, loss of spontaneity was
interpreted as a challenge to social participation, and perhaps to an even greater extent, a source
of “othering,” when AYAs could no longer keep up with friends. In addition, it threatened
autonomy when demands of the body and environments trumped personal preferences or choice.
To follow impulse, to be spontaneous, disrupted schedules that were critical for promoting
continence, skin integrity (J. Jackson et al., 2010), and even medication regimens for
management of pain and spasticity.
Unpacking experiences in health care.
Issues relating to health care and self-management were pervasive across the data corpus
and must be unpacked further to understand how demands were felt and responded to in context.
Immediately following onset of neurological dysfunction from SCI, AYAs experienced swift and
intensive immersion in medical environments. However, experiences in health care were not
only acute; AYAs required additional support as they transitioned to communities and
experienced complications. Across-cases, there was great diversity among each AYA’s
knowledge, comfort, and participation with health systems. Understandings of SCI and its related
complications, along with AYAs’ abilities to address emerging concerns once they were
immersed in community life, appeared to be impacted by relationships with health care providers
and ways they were involved in their care from the outset. To illustrate the range of experiences,
several exemplars will be reviewed.
Given significant changes to bodies and functions, time in rehabilitation provided space
to begin grieving perceived losses and to adjust to changed bodies and circumstances.
Accordingly, some AYAs recounted ways in which health care providers did more than attend to
their bodies. Here, an AYA described the relationship he developed with a physical therapist:
I think he feels- he calls me the G.O.A.T. That means the “greatest of all time” because
he- I think he knows how bad I want it. And he pushes me, and he- I don't know, like I
don't really even open up with people. And like I felt the connection with him, like I
mean I love all the therapists, but he- I think he understands me the most. He knows how
hard I want to work. He knows how bad I want to succeed, and he helps me with it. So,
he's a good motivator, cool person just to chill and talk about sports with, like just a cool
person, even outside of just his work.
Furthermore, rehabilitation spaces were set apart from community life, and thus provided
opportunities to practice social engagements in a new body, or under changed circumstances. On
several occasions when I observed Pharrell on the hospital campus, he moved about with ease.
He was confident and seemed eager to be recognized by health care providers and other hospital
staff. It this environment, there were many people he trusted to ask for help if anything went
wrong, and he appeared comfortable advocating for assistance for things like retrieving his meal
Therapists facilitated outings to the community in limited doses, and in one of the
rehabilitation hospitals, past patients were invited to participate in a support group alongside
adolescents with new SCIs in the inpatient care setting, creating space to talk openly about
challenges accompanying changed bodies and circumstances while still in a protected space. At a
time when AYAs were forced to acknowledge the vulnerability of the body, and when social
relationships were destabilized by contextual changes, affirmations from care providers and
dosed practice engaging in the “real world” appeared to support feelings of self-worth and
stimulated motivation and hope.
Jacob was 15 when his cervical spine was damaged during a sporting accident. He
reported having immediate and overwhelming support from family, friends, and a wide-reaching
community of fellow athletes and neighbors. This network of support advocated for his direct
involvement in education and decisions relating to his care, and it gave him space to feel valued
and heard. Transitioning into community life, he continued to benefit from established
relationships with a range of professionals, including doctors and therapists. As such, he
demonstrated immense knowledge about SCIs throughout his individual interview, even
comfortably using medical terminology in reference to himself and his medical treatments.
When I asked Jacob how he was involved in his care and what he would do when he had
questions or concerns in present day, he replied:
Well, I'm very fortunate that one of my really good friend's parents is a sports doctor, so
they're usually step one. Step two would be the surgeons that did my surgery. It doesn't
really go beyond that because they're very knowledgeable and they know what's going
on. But yeah, step one is usually a very close family friend that's been around it for 20 or
so years, so they usually have the answer.
In saying “it doesn’t really go beyond” asking his surgeon, Jacob implied that he had never
experienced unanswered questions. He felt empowered to ask questions as they emerged, and he
felt confident in understanding his injury and recovery.
Omar, on the other hand, had a very different experience of health care. He was 18 when
a gunshot damaged his thoracic spine. In spite of being of age for adult consent, he reported
feeling left out of his care, beginning from his initial days in the hospital:
[The first thing I learned about my injury was] that I guess my injury was T11. I guess
that’s how I first heard it, was “T11” – the way the doctor explained it to my parents,
even though I was ear hustling. Then, I was just hearing the T11. Because he didn’t want
me to hear. The doctor didn’t want me to hear, so I’m like, “What the fuck? If I’m the
one who’s injured, why am I not going to know?”... [The doctor] asked my parents to
come out [in the hallway outside my room], but he was at the door, and you could still
hear. So, he was talking about some T11, and I wouldn’t be able to walk again.
Over time, Omar never felt satisfied with the education he was provided about his injury, and he
did not have a health provider he trusted. Especially once in the community, there was no one
with whom he felt he could discuss his experiences or prognosis. An absence of trusted
resources, beginning with a concerted effort to distance him from medical discussions, appeared
to impact ways in which he coped with his injury. He relied entirely on sensations of his body to
understand his injury and prognosis, and without an understanding of how he could be involved
in meaningful activities regardless of disability, he assumed many things were no longer possible
for him and his life. Isolated in his home, he grew frustrated with immense uncertainties.
Data from Gordon shed additional light on the significance of limited opportunities for
AYAs to engage in their care. Gordon was shot in the neck when he was 18, resulting in
tetraplegia, and the experiences he and his caregiver described after his injury seemed to
discourage his exploration and learning. For example, in the acute stages, few providers talked
with him, few people visited, and his body existed primarily in bed with limited attention beyond
crisis management (e.g. intubation, surgical management of the spine). He shared how he was
bounced from one facility to the next before getting to rehabilitation, and his data are striking for
the absence of experiences (and information) he had available to him:
I went to- I could say about seven different hospitals because there would be one hospital
not knowing what to do, then the next one, and the next one. So, my last hospital I went
to [a rehabilitation hospital]. I was there for a month. That's where I got most of my
With a complete SCI at cervical levels 5-6, Gordon had extensive paralysis. He was
unable to move his legs or any part of his torso, and he had limited strength in the few muscles
preserved in his arms. When he was shot, bullets hit his chin, neck, and shoulder. Acute medical
interventions included: a halo brace to stabilize his cervical spine; a tracheostomy and use of
mechanical ventilation to breathe; and immobilization of his jaw to promote alignment during
healing of mandible fractures. His body was paralyzed, and the only areas not directly impacted
by the SCI were restrained as indicated for healing. I imagined this must have been confusing for
a previously active young man, and during one interview, I tried pushing him to talk more about
his early experiences. I first asked him to describe why they sent him to different care facilities,
including two convalescent homes:
CH: Why did they send you to those [hospitals and convalescent homes]?
Gordon: I'm not sure.
CH: So they just showed up and brought you to the convalescent home without really
talking to you about it?
Gordon: No, I think they mostly talked to [my girlfriend] about it.
CH: When you [were transferred], was there anybody you felt like you could ask
questions to, or talk to about it?
Gordon: Mmm, really just [my girlfriend]. I couldn't really talk at the moment ‘cause my
mouth was wired, too, so.
CH: Do you remember if you had questions at the time, or what you were kind of
thinking as you did that- moved from one place to another?
Gordon: Not that I can think of right now.
CH: So then after the two convalescent homes, where did you go from there?
Gordon: To [rehabilitation]… [The rehabilitation hospital] was the last hospital I had
went to. I was [there] for a month.
In some instances, individuals with a new spinal injury may stay in acute care or skilled nursing
environments until their bodies are ready for, or can tolerate, movement. While involved in
rehabilitation, this may have been the reason for some of Gordon’s transfers, but it is impossible
to know based on the experience as he remembered it. Curious about his relationships with
health care providers, I went on to ask:
CH: What about now, when you go to the doctor's, how does it- How does it feel- do you
feel like you can ask [your doctors] questions?
Gordon: Umm... Yeah if I have any, but most of the times, I kinda already know things.
CH: How are you learning some of the things that you wanna know?
Gordon: Um... I don't know.
Gordon had trouble articulating specific questions and concerns about the state of his body, yet
he felt he “kinda already [knew] things,” which was likely a testament to feeling as if there were
few opportunities ahead. From the beginning, Gordon was led to believe there were few
opportunities for him and his body. Transitioning from place-to-place, he said no one knew what
to do with him. They placed him in convalescent homes and passed him from one medical team
to the next. Yet, to my shock, Gordon had very little to say about unanswered questions during
his acute care; his narrative suggested a loss of hope, which manifested as a passive approach to
understanding his situation. It seemed he was not looking for information about his body, and he
did not question why he was placed in nursing homes with older adults. Health care providers
spoke with his girlfriend, and he did not remember asking questions.
Gordon’s remarks in another interview further implied significant disengagement from
his medical care and rehabilitation based on feelings of anger and loss of hope. He said, “At the
time, I was still kind of like mad at the world, so I mean it just felt like things weren't going to
get no better than what it was.” Looking further back in his narrative, Gordon, an African
American man, grew up in a poor community that is also known to be quite violent. His parents
separated when he was young, and his father spent much of Gordon’s childhood in prison. In
high school, Gordon made a plan to escape his neighborhood by joining the Air Force. He
assumed, through physical and mental training, that he could overcome constraints to
opportunity that had culminated from generations of injustice before him. Now, with what he
understood to be a broken body, it seemed likely that his hope was lost. His fate was now to
return to his community, where he perceived he would live in poverty because he could not
imagine profitable work roles, and he would continue to face risks every day with very little
For his activity observation, Gordon invited me to attend an outpatient therapy
appointment with him. Our afternoon plans included travel to and from the clinic using public
transportation system (his usual routine) and attending a one-hour physical therapy session. To
get from his home to the clinic involved a bus, train, and then another bus. With two transfers
each way and some navigation on city streets and sidewalks, many variables were beyond his
control, including how long he would have to wait at each transit stop, whether the elevator
would be operating at the train station, and if there were sidewalks with smooth enough surfaces
and cutouts for him to safely navigate in his power wheelchair. In addition, there were challenges
for things like managing his bus pass and wallet since he lacked dexterity to manipulate objects
in and out of his pockets. In our planning, he said we would need to leave his house by 12:30 to
make it in time for his 2:00 appointment.
When I first arrived at his house, he was dressed and sitting in his wheelchair. He asked
me to load a few things into his backpack and to hold up a water bottle for him to have a few
drinks; then, we were on our way. My field note tracks several occasions when he needed my
assistance throughout the afternoon, such as opening and closing the door to his house and
getting through the ticketing area at the train station. To my surprise, and I think to his, as well,
each leg of the trip went quite smoothly with only brief wait times at each station and courteous
drivers on each bus. In total, it ended up taking less than an hour to get to the clinic, so we
stopped at a fast food restaurant to grab some lunch while waiting for his appointment. After he
placed his order, he asked me to retrieve the wallet inside his pocket and count out money to pay.
It was unclear how he would have managed without me there, but I noted how often he had to
trust others in a “simple” community outing.
Overall, I felt disappointed in his therapy that afternoon. His therapist was late, and when
she did arrive, Gordon expressed that he wanted to start out on the “bike.” After a difficult (and
unsafe) dependent transfer, Gordon was positioned on an elliptical-style bike with straps to hold
his hands and feet in place. He did not have the strength to push it on his own, so a motor in the
bike generated cyclical motions while he tried to activate his arms to move along. Once the
movement started, his therapist asked, “Are you okay for a minute? Can I go write some things
down and come back?” Gordon agreed, and she disappeared. He focused his eyes on how his
legs moved, and I could tell he enjoyed the activity. Therapy was something he seemed to look
forward to, and based on his request for this exercise, I noted it must be a place he goes to feel
his body move in ways he cannot replicate at home. However, it seemed the bike was actually
doing most of the work, providing little opportunity to test himself. I watched the clock, and
recalled the following in my field note:
[The therapist] was gone for almost 15 minutes. She just came to check on him once
during that time… By [the time he was finished] we were over halfway through his
therapy session because of how much time it had taken him to get [set up].
With the remaining time, his therapist transferred him onto an exercise mat with
assistance from another therapist (another dependent transfer). Her plan was to work on
improving his ability to balance in a seated position, where his arms would be used as prop
support. However, with contractures in both of his upper extremities, the therapist was unable to
determine a position that would work within his available range of movements. After some
deliberation, she called the other therapist back over to help. In my field note, I recalled:
They just kind of played around with his balance, and he was very quiet. He didn’t say
much. He had a very serious face, so I think he was trying and kind of really working or
focusing on it… She did a bit of talking around him and kind of talking about his body in
a way that was certainly not very strengths based. She talked about, “You can’t do that,
can you? You can’t really use that arm, can you? You just get somewhere in the middle,
don’t you?” The way she was talking about him, I thought again, didn’t support him
actively engaging in the session and kind of appreciating his body and what he has to
Afterwards, he had little to say about the appointment, but I gathered he was satisfied. Still, I
could not help but think about all of the energy that he regularly devoted to getting to therapy,
and yet only a fraction of the time offered active engagement. The therapist spent less than half
of the session at his side, and she gave him nothing to consider for building strength or practicing
skills at home between his once-weekly appointments. When I learned weeks later that he had
been discharged from outpatient services, I was not surprised – how could he make progress to
justify ongoing services with such an approach? I actually wished he had expressed
dissatisfaction with his therapy that day, but instead, I am left to assume it was a typical
experience. Similar to ways he described his inpatient care, it seemed Gordon was not being
encouraged to engage in his rehabilitation, and he had not developed skills for self-advocacy in
these settings. Likewise, without noticeable self-assertion from Gordon, it is possible this
therapist judged his motivation to be low. Caught up in demands of productivity and
documentation, she may have lost sight of how significant moments in therapy were for Gordon,
and she may not have had the energy, experience, or resources to challenge him more in the
Throughout the study, Gordon rarely spoke about ways he learned about his body, his
injury, or a possible prognosis after he was shot. Even when probed, he only mentioned periodic
searches on YouTube to understand techniques for transfers and other discrete skills. There was
also one instance when he met with a peer mentor to talk about wheelchairs and adapted vans.
Gordon’s style was very different than his girlfriend’s (also his caregiver), who sought out
information about his injury and possible future opportunities using every resource she was
aware of (e.g. social media, YouTube and other online searches, peer mentors, hospital staff,
printed materials). The contrast between Gordon and his girlfriend’s levels of activation to
understand his injury and prognosis was perhaps a testament to the amount each person was
involved in education and care. It was also likely a reflection of the pain that came with
acknowledging changes to the body and being unable to imagine other ways of rising above a
history of disenfranchisement. Given what Gordon knew from social and historical contexts,
along with his immediate physical environment and body, he appeared to feel much of life
occurred beyond his control, and he had nothing to help him imagine life beyond immobilization.
His girlfriend, on the other hand, was not paralyzed, and she could still align her experiences
with her long-term goals. Thus, she remained active to pursue a life she imagined for them both.
With a retrospective lens, experiences of participation in health care across the data
corpus seemed like indicators of self-efficacy or activation in community life, although other
contextual factors were likely at play. Regardless, engagement with health care providers and in
the health care process itself (specifically, education and decision-making) warrants ongoing
consideration, especially in related goals of rehabilitation and development for AYAs with a
SCI. Positive experiences during inpatient, acute care and rehabilitation were followed by
positive experiences in the community, while a lack of positive experiences in care also seemed
to have significant effects.
Impacts of place.
Unpacking experiences of health care indicate the significance of place and the power of
interpersonal relationships for how they can be constraints and affordances to participation in
daily life. Looking beyond health care environments, social and physical environments were
significant to note across community participation data.
Distinguishing home from “community.”
References to community life in rehabilitation contexts often broadly encompass
individual homes and communities. However, there were significant differences in the intensity
and quality of participation among these settings. Stories from many AYAs’ experiences at home
were notable for fewer activity references. Going out in the community was often done in the
framework of a goal-oriented activity (e.g. to eat at a restaurant, meet friends, go shopping),
while being home did not necessarily impose the same contingency. Conversely, being at home
provided space for a reprieve from activities.
Across the cohort, it seemed the majority of time was spent at home, yet there were few
activities requiring active participation or challenging the AYAs’ skill development in that space.
Primarily, reflections of home life included passive activities, like listening to music and
watching TV, as well as receiving support to care for the body and complete activities of daily
living, including instrumental tasks like meal preparation and laundry.
Given how environment is constituted by action and interactions, social features of
environment appeared to play a significant role, some of which will be discussed further with
caregiver dynamics. However, home may have also lacked affordances for participation, like
when there was not appropriate space, equipment, or support to engage in meaningful activities.
One unique feature, extending across all settings, was access to phone and Internet. In the home,
phones offered opportunities for social engagement without concerted effort, and in spite of
limited discussion of technology in daily life, I frequently observed AYAs use their phones to
connect with outer worlds. Phones were also used as a lifeline to reach caregivers, even when
they were just in another room, and a tool to coordinate activities in the community.
Notably, activities in the community required significant effort for planning and
execution. For example, one AYA described how leaving his home was difficult because he had
no way to travel with his power chair, except to drive the chair itself. This was important because
this AYA did not have enough upper body strength or coordination to push his own manual chair
in the community, so leaving home in his manual chair meant he would be dependent on others
for moving about the environment, rather than having the ability to move about space on his own
like he did in the power chair. I asked, “When you go places, do you take your power chair or
your manual chair?” He replied:
It depends on if the place is close, and I meet her there [in my power chair], or if we're
going out like kind of far-ish, yeah, I'll take the manual chair… Yeah, like I met her at
Food for Less [in my power chair] yesterday to do a little shopping.
In order to navigate the aisles of the grocery store by himself, this AYA drove to the store in his
power chair, where he met his girlfriend, who had driven their car because it was too far to walk
with groceries. Therefore, they traveled separately in order to engage in the activity of grocery
shopping together. Such a complicated scenario for leaving the home was presumably
discouraging, and other data indicated this AYA in fact rarely left home expect for medical or
therapy appointments or when he could primarily remain in their car throughout an outing.
Perhaps as a result of similar environmental complications, a few other AYAs described
primarily hosting friends in their homes, rather than going out into their communities. In some
cases, hosting friends was a preferred activity even before their injuries, but most stories
indicated that AYAs felt having friends come to them was the easiest way to spend time
together. For example, one AYA described how things changed with her friends when she
became paralyzed and could no longer drive. After her SCI, she spent time with friends at her
house and was rarely invited to go out. She said:
There’s, like, the issue of, like, the whole transportation. Like, I can’t drive and I’m, like,
working on it. But, like, driving has been kind of like an obstacle, I think, when meeting
up with friends, yeah. Because, like, my friends do come and pick me up; like, that’s
usually what happens. But it’s always, like, a little bit more of a hassle. And I don’t
blame them. I mean, I’d probably do the same. Like, it’s a hassle to pick people up and,
like, drive back to the place, and then drive them back and, like, things like that. So, they
do invite me, but not as- not- I don’t think to as many things that they would have if I
wasn’t injured, yeah.
CH: Can you fold up your chair to go in a car or is it a rigid frame?
Leah: It’s a rigid frame, but it fits in the trunk. So, that’s not really an issue. And most of
my friends know, like, how to- I mean, I transfer myself. But before I was able to transfer
myself, they would just come and we would stay at home.
Eventually, this AYA learned to transfer out of her wheelchair so that she could ride in friends’
cars, and nearly five years after her injury, she earned her license to drive with hand controls.
These changed circumstances afforded new and more frequent opportunities to participate with
her peers, but in her early transition to the community after injury, having friends come to her
home was most realistic. However, the downfall was that she felt it impacted what her friends
thought was possible for her, as evidenced by diminished invitations to join them at parties and
Even with driving, there were challenges, which I came to appreciate on the day of her
activity observation. She invited me to observe her putting on her make-up and then she would
drive me to a large cosmetics store, where she enjoyed shopping. As we went out to her car, I let
her know that I did not want to get in the way of her normal routines. I said I would help with as
much or as little as she wanted throughout the afternoon, but I would not help unless she asked.
Immediately, she asked. In my field note, I described my observations of her getting into the
She got into the car via sliding board [and asked for my help to place the board and
secure her wheelchair]. The transfer was a little trickier for her than I expected based on
how she’s talked about it in the past. She’s talked about transfers fairly casually, but this
required quite a bit of effort.
…Once she’s in the car, she then had me take the wheels off her chair. The
wheels go in the backseat and then the actual chair goes in the trunk. I would say all-in-
all it takes at least five minutes to get in the car and the chair in the car and vice versa
getting back out, at least five minutes. I meant to actually time it but just forgot when I
was helping her out with things.
Already, before we even left her driveway, I was surprised by how much assistance she needed
since I knew she sometimes drove places alone. However, I recalled that she had mentioned
coordinating to have someone be at her destination to help get out of the car.
In my field note, I wrote about the experience once we were on the road:
She’s a very nervous driver. She has the steering wheel control for her right arm and the
gas and brake with her left.
I could observe the stiffness in her neck as she turns. In addition to the seatbelt,
she has the extra chest strap that pulls across to keep her torso in place. She likes it really
tight. I had to cinch that up for her really tightly.
…At first I didn’t want to talk at all because I know she likes to minimize
distractions [while driving]. Then, she talked to me a little bit. I asked her, and she said
that it was fine – we could talk, but if she ever had trouble then she would just not
respond to me… I still didn’t feel comfortable talking too much because I could tell she
was really nervous. She even said multiple times, “Calm down, Leah. Calm down, Leah.”
If she was in the car by herself, I’m guessing it’s exactly the same. Left turns are
hard for her, and she gets really anxious about them. She really hates the freeway. She
got stuck going on the freeway on our way home, but it was just very briefly. She was
really anxious. The whole reason we had to go on the freeway is because she got stuck in
a… freeway only lane and she couldn’t get out of it. Even merging or changing lanes as
she’s driving is really tricky. She needed me or asked me to check the right lanes for her
every time she changed lanes and really relied on that when we were driving on surface
streets and on the freeway.
Her phone and wallet she puts in the door of the car but at each destination she
needs someone to pull them out of the door for her... She can’t get them out by herself, so
they’re stuck there. Then she needs help with all of the doors.
Being part of the driving experience made me more aware of how much assistance Leah
required, even under the veil of being an independent driver. It was also a very stressful activity.
She described how she memorizes directions ahead of time for wherever she needs to go because
she doesn’t feel comfortable turning her head to phone navigation. Also, with hand controls for
driving, she did not have the ability to adjust the thermostat or radio while driving; all of this had
to be coordinated before she started or at full stops. Driving independently was a significant
milestone for Leah, and it afforded many new opportunities, but it also came with many risks.
Cars were an unexpected, emergent sub-theme in the examination of activities and
participation, especially when considering affordances of “place.” Cars were symbols of
independence and autonomy, and individual access to- and use of cars were challenged by
paralysis. Everyone in the cohort had some driving experience before their injuries, but without
the ability to manipulate pedals on the floor of standard vehicles, it is common for individuals
with SCIs to require modifications, including hand controls and adjustments to power steering, in
order to drive again. Such modifications are costly and demand a dedicated vehicle for the AYA.
Beyond skills for driving, accessibility to driving and passenger seats is difficult for wheelchair
users. If an individual can transfer from their chair to a car seat, the wheelchair can be stored in
the car separately (often folded or dissembled for cargo areas). However, power wheelchairs are
too heavy to lift into a car, and some people rely on trunk support from their wheelchair or are
unable to transfer to a car seat. In such cases, a lift or ramp is needed to move a wheelchair
directly in and out of a car. For proper clearance, this usually also requires a dropped floor or
lifted roof, and there must be a mechanism to secure the chair while cars are in motion.
In spite of, or perhaps as a result of, such challenges, cars were featured in many
participant stories – something they longed for, took pleasure in, or found useful. Some AYAs
spoke of cars as a destination in and of themselves; a place they would spend time, even when
there was no particular place to go. Cars provided a change of environment from home, and they
had personal and social capital. Having a car was a status symbol, a means of meeting up with
friends or reliably getting to appointments. Without a car and/or the adaptations or training to
drive one, AYAs experienced increased isolation and thus, felt an escalation of disability.
Analysis of these data points revealed how not only the purposes of activities matter, but also the
places in which they occurred. In fact, sometimes place appeared to matter more than activity. To
be in the car was seemingly “enough” to feel engaged in something meaningful. As one AYA
said, “We're always out and about. I spend more time in the car. Just cruising or something. I
can't stand being in my bed.”
Cars were also a place to feel secure, like in one case where an AYA often waited in the
car while his caregiver was out in the community so that he could be close to her if he
experienced any emergent care needs. Also, this arrangement allowed her to participate in
activities further from home and for longer periods of time than if she had to return for every
care. Even to participate in a group interview, the caregiver reported the AYA was “In the car.
He’s watching a movie.” In the moment, her tone was casual and she did not elaborate further, as
if it was an everyday occurrence for him to spend time in the car, even as it was parked in a lot
away from home.
When this caregiver needed to find a job outside the home to cover their expenses, she
used the car to expand her opportunities. In this example, she described the car as a place where
her husband, who had a SCI, could spend time while she was working:
[The manager] needed employees for every shift. And, so, I had just- I told her, I said, I
can’t do graveyard shift. I said, you know, my husband’s situation- I said, I can’t do that.
I can’t spend the night. I won’t be able to do that unless he’s okay with it, and that means
he’s going to be in a car the whole entire time from 10:00pm to 7:00 am. I mean, it- it’s
possible he may want to one time; you know, he’ll watch Netflix and then fall asleep.
That’s why I applied for a part-time [position] because I know that I can go six hours, and
he’ll be okay. And even with that, he could sit in the car for six hours, and on my break, I
could come and check in on him.
Anything longer than six hours, he would minimally need assistance with bladder care, but even
then, she knew he could spend her shift in the car. With him situated close by, she could run to
the parking lot over her break, assist him as needed, and return to work without a disruption.
While it may seem abnormal for someone to spend prolonged periods of time alone in a
stationary car, examining the context in which these two lived demonstrates how the car was
both a meaningful metaphor and a tool – a symbol of independence and a mobile place. This
AYA was unable to transfer himself independently and required a power wheelchair to easily
navigate spaces, especially uneven terrain in the community. Because of his dependence for
mobility, he was accustomed to staying in a single location for several hours. At home, it was
typically their couch, but it seemed the seat of their car was also a place he felt comfortable. In
the car, he could be “out” in the community while remaining in a safe or comfortable space.
Further, he spent much of his time at home watching movies, so to plan on sitting in their car for
several hours to “watch Netflix and fall asleep” was reminiscent of what he might do at home.
Therefore, time in the car was not strange or difficult for him, and it essentially extended his
“home” environment so that he could stay close to his caregiver without restricting her activities
to things they did together.
Because AYAs often required some assistance in their day-to-day lives for self-care,
home management, transportation, and other instrumental activities, their caregivers, health care
providers, and other social networks appeared to have a direct impact on opportunities and
perspectives. Like in the examples above, where some AYAs were deeply engaged in their care
while others were not even given much information about injury or prognosis, levels of
engagement impacted ongoing practices and perspectives on what seemed appropriate and
possible – like having all questions answered by doctors versus turning to one’s own body and
being left with many unknowns. Gaps in engagement and limited opportunities to ask questions
left some AYAs feeling as though health care settings were places for passive participation, to be
cared for but not engaged in care.
Beyond formal care providers in medical settings, there was a lot of interaction with
caregivers in day-to-day life. Typically, AYAs separate from parents or guardians during these
periods of life; they focus on relationships with peers and explore independent identities (Arnett,
2000; Erikson, 1964b). Conversely, for these young people who had experienced sudden
disability, the majority of their time was spent in close proximity to care providers, who were
often parents, loved ones, and other family members. Two AYAs with tetraplegia also trained
friends to provide assistance when needed in order to facilitate more time in the community. As
one of these individuals described, having friends involved as caregivers allowed him to blend in
more easily with peers. He said:
I actually just have friends or students at college come with me and help [during my
classes]; makes things easier. They know how it all works, what I'm going to need,
etcetera. Obviously, they could learn it as well, but I just prefer to be around people my
age, and not at least look obvious that I need help. So, having another college kid around
is easier, and I prefer it more just because it's more of a college life than being here,
knowing you need help. You do, but just avoiding the obvious scenario of “I have a
caretaker around me.” That person is disguised as someone else who's in class.
Across the cohort of AYAs, activity levels at home and in the community appeared to be
significantly mediated by caregiver dynamics. For example, several AYAs were capable of
performing some steps to get dressed (e.g. pushing arms into shirt sleeves, shifting weight to
advance pants over hips), yet they described receiving total assistance from caregivers for such
activities. In some cases, caregivers described how it was faster to complete activities of daily
living without AYA engagement, so to do all of the work required less time from the caregiver.
However, it was also possible AYAs preferred to save their energy for other, more desired
activities. Timing or efficiency were described in AYA and caregiver narratives to impact the
amount of assistance provided for activities at home, but other variables like motivation and
strategies for energy conservation were also likely factors based on analysis of the data corpus.
Furthermore, limiting participation in self-care activities could have been a coping strategy for
AYAs who had difficultly reconciling with changed bodies (See Chapter 4).
Examining mediators of action and experience in context has necessarily included ways
in which caregivers and other people influence environments for AYAs, but influences of- and
experiences for caregivers warrants a more elaborate discussion of how it shifted socialization
for AYAs in daily life. A remarkable finding was the extent to which occupations that are
typically considered solitary or parallel in the absence of disability necessarily became shared or
co-occupations after SCI. Humans experience varying amounts of sociality in any given day,
with a mixture of time spent alone and time spent engaged with others in activities, or
occupations. Time spent with others involves coordinating interests, schedules, and actions
among individuals or groups, and it “give[s] shape and form to our daily rounds” (Larson &
Zemke, 2003, p. 80). The social nature of occupations influences the sense of time and meaning
of activities. Levels of social engagement have been described in occupational science as
solitary, parallel, shared, and co-occupations (Zemke & Clark, 1996), and these categories can
be useful to characterize sociality and evaluate its impact on experiences. Solitary activities are
done in isolation, though they may still be influenced by social pressures and relationships.
Parallel activities have common aspects of space or time with other persons, but the activities
themselves are separate, like when students work on individual class assignments in the library.
Activities are shared when efforts are organized among two or more people to achieve a common
goal, like when a crew builds a theater set. Finally, co-occupations mark the most intensely
social tasks, where individual actors engaged together in an event or activity shapes experiences
for each actor involved (Pierce, 2009). Examples abound in family life, like times when a couple
prepares a stew or a child races toy cars with her father. The concept of co-occupations rose
primarily from studies of child development, especially in the evaluation of activities between
mother and child, but it can be extended to occupations where the participation of each actor
influences the experience and/or outcome of the activity for the other(s).
Across the cohort, AYAs spent very little time alone; likewise, their caregivers also
shared many experiences. Especially among AYAs with tetraplegia, it was difficult to identify
activities that were not directly supported and affected by caregivers or kin communities.
Likewise, AYAs influenced activities for caregivers as their environments, needs, and
perspectives overlapped one another. Some co-occupations were planned and coordinated, like
helping an AYA don a shirt or eat a sandwich. Other co-occupations were a result of
unanticipated shifts in the social nature of activities. Even sleeping became a parallel activity
when AYAs and their caregivers coordinated schedules and environments to be close to one
another for routine care, such as changing an AYA’s body position every few hours to avoid
pressure points, or for emergent needs, like addressing noxious stimulants contributing to
Specific to this finding, level of disability seemingly had a negative correlation with time
spent alone, although data was not collected to support such a definitive analysis. For individuals
who lacked strength or coordination to interact with their environments, solitary time was largely
sedentary, especially in more acute stages of life after injury. For example, many of the AYAs
reported spending much of their time watching television while lying in bed or sitting in
wheelchairs. Such activities could be set up by caregivers or controlled with adapted
technologies so that caregivers could leave the room or focus on other things until a change was
required. In the following excerpt, one AYA describes various ways she struggles with
participation and relies on extensive caregiver support for everything from self-care, to leisure, to
I can't do anything. I can watch TV. I can be with myself, with my thoughts, talk to the
person next to me. But that's about it. And I feel bad calling the nurses to be like, “Can
you change from Netflix to Hulu? Can you connect me?” I feel bad, because I don't want
to bother them for these things. I feel like they're so simple and I can't even do it.
… My dad got me this thing… so I can use my eyes to use a tablet… I haven't
tried the games, but I can type on it. So, I can use my email. I can go online. I can use
Netflix. I can do a lot more stuff with it. I don't have to bother people.
…[To keep in touch with friends] I just call my secretary [jokingly referring to
her mother]. … She has my phone, so she gets all the texts.
Mother chimes in: I’m texting your boyfriend to get his flight number so I can pick him
up tomorrow. See?
More active pursuits of AYAs required increased coordination and engagement of caregivers.
Otherwise, they posed significant risks to the wellbeing of AYAs’ in cases when AYAs did not
independently have the ability to manage their bodies or environments and were not
accompanied by caregivers. In one example, an AYA shared a story of trying to go out with a
friend who also had mobility impairments when they did not bring a caregiver. He said:
[My friend and I] met up at the train station, and we was waiting for the bus. And
sometimes, for some reason, his- his handle be popping off [referring to joystick for
power wheelchair]. So, we was waiting for the bus, and he end up knocking his thing
down, so I had to ride and find somebody to come pick it up for him. And then, like, two
minutes after that, his hat end up falling off, so I had to go get the same person to come
pick up the hat. Then we end up just going to his auntie house [instead of going out]. We
was just chilling over there playing dominoes.
This AYA tried going out with a friend who also had a disability. In spite of their attempts to
help one another, there were limitations to what they could do. The AYA could not bend to the
ground to pick up his friend’s joystick or hat; instead, he relied on social skills to find someone
(a stranger in this case) willing to provide assistance. Ultimately, after back-to-back challenges,
they retreated to the home of his friend’s aunt, where they could relax knowing there could be
adequate assistance if and when needed.
The social nature of occupations depended on activity demands and functional capacities
of AYAs, but data also revealed how even simple or familiar solitary tasks quickly required
coordination with caregivers when activity demands changed. For example, in a group interview,
one AYA stated:
Sometimes you need help to do the most minimum things, you know, just like getting on
the chair. Like, if my chair rolled down the hall, you know, I can't get it. I'm not going to,
you know, drag myself. And, well, that does kind of - it affects your relationship in a
good way and a bad way, you know? I noticed a lot more arguing, but at the same time,
it's like we're much more together.
This unanticipated escalation of interactions impacted the AYA and his caregiver. Under normal
circumstances, he was able to transfer in and out of his chair independently. He could get himself
dressed and manage nearly all of his daily activities in the home without help. However,
unplanned challenges, like when his wheelchair rolled from the bedside, led to involving a
caregiver in a task that would otherwise be done on his own. Because of this, he spent little time
alone in spite of having the strength and coordination for independence.
Another profound example came from Jacob, the college student with tetraplegia
mentioned earlier. Jacob seemed to spend very little time alone. Even things as negligible as
scratching his own face, let alone more intimate and involved management of his body, shifted
necessarily from solitary to shared or co-occupations with his primary caregiver (his mother).
These two orchestrated their routines with one another in order for Jacob to have the support he
needed. In one interview his mother reflected on how vigilantly she kept watch, sharing:
We actually set up baby monitors, so we have one in our bedroom and we have one down
in the kitchen. And if I’m somewhere where I’m not going to hear it, I’ll take it with me.
If he’s sleeping, or, you know, if it’s late at night when he’s in bed and I’m still up down
in my office or whatever.
Such a set-up meant that this teenager was rarely ever “alone;” someone (often, his mother) was
paying attention nearby. At college, however, he relied on support from friends to normalize his
In many cases, the social nature of day-to-day life hung in the balance of activity
demands and functional capacities, rather than being a result of personal preferences; this
disrupted schedules, activities, and meanings of time and experiences for both AYAs and their
caregivers. In some cases, increased time together strengthened relationships, but it also caused
stress when individuals felt they had limited control of this dimension of their lives and
autonomy was continuously negotiated in vivo.
Shared experiences among AYAs and caregivers increased significantly after injuries,
while socialization outside of care communities or with peers was often more constricted.
Typically, developmental trajectories indicate that individuals spend less time with parents or
guardians during adolescence and young adulthood in order to explore independent interests and
lifestyles. Therefore, this finding points to a peculiar social imbalance for the majority of the
cohort, whose caregivers were also their mothers. In addition, even for the two participants
whose caregivers were also their romantic partners, time together was intensified, and the
activities they shared were significantly different than what they might have otherwise chosen.
AYAs and caregivers described several ways in which they felt isolated when
consequences of the AYAs’ injuries included changes to social landscapes or communities. Here,
an AYA reported having his social network dissipate after injury:
It feels like I was kind of hurt by- like a couple- well, just one of my friends really. I used
to be with him like every day, like every single- or two of my friends actually, every
single day. And like they came to the hospital when I first- when it first happened. But
this one person, he came to the hospital when it first happened. He calls me his brother,
you know, like we call each other brothers. And I know if it was the other way around, or
for both of the friends, I would be there way more. And maybe I'm saying that because I
know what it feels like, but I just know what type of friend I am. I would be there more,
like I know what you guys are doing. You're not doing- [it’s] not like you're at college, or
you got a 9-5 job, or something. I know what you all are doing. You ain't that busy. So,
it's just a little disappointing. Like man, I'm supposed to be your brother, and you're not
even- like he didn't even call me since I've been here.
This AYA felt abandoned by his “brothers,” and several AYAs shared similar stories of
disappointment when their friends did not show up.
Many caregivers in the study also reported isolation, although the roots of their
experiences appeared to differ. Caregiver stories included ways in which they pulled away from
friends in order to support their loved one. Similar to AYAs, their social support failed to
accommodate their personal needs, but unique from AYAs, caregivers suggested feeling some
amount of choice in the matter. In a group interview, one caregiver said:
One day I remember, I remember I used to have a little bit [of a] social life. But because
of my daughter- so for a long time, one time I went out, had breakfast with my friend,
and then I say, “Okay, I got to go back.” And they say, “Why? You have to be - you
know, you have to enjoy your life. Let her go!” I say, “Let her go? She's still on the bed
waiting for me, you know. If I don't go home, then she's going to be there all day.” So,
that's- most people don't understand.
Caregivers largely attributed changes in social relationships to limited time or availability to
engage with individuals outside of their nuclear families, rather than abandonment. However, it
was common for the caregivers to feel friends and family did not understand the vulnerabilities
of living with a SCI and the related demands of being a caregiver. Narratives of both AYAs and
caregivers revealed fear of judgment and stigma, which dominated actions.
Whether desired or not and whether planned or not, overlapping time and efforts in
participants’ lives led to an abundance of co-constructed experiences focused on promoting
functions and wellbeing for the AYAs. However, the social nature of experiences cannot be so
discretely categorized as is perhaps suggested here. Depending on the unit of analysis (e.g.
granular examinations of a moment versus generalizations of an hour or day; discrete demands of
a task versus an activity as a whole), the extent of sociality in daily life for AYAs and their
caregivers can be reported differently. For all humans, even solitary actions can have social
dimensions. Individuals exist in social worlds, from intimate to pubic, which add to the
complexity of experiences. Micro- and macro- layers of context influence all activities
(Laliberte-Rudman, 2013), and as such, all activities carry a level of sociality, including those
stemming from historical structures affecting opportunity and environment.
In caregiving, often demands of the tasks themselves, rather than personal preferences,
dictated the amount of time AYAs and caregivers were required to spend together. For example,
caregivers could not begin an AYA’s bowel program and then leave the house. This activity
required multiple steps to be executed in a carefully coordinated sequence that was dependent on
the response of the AYA’s body and the set-up of the home. As such, time spent in caregiving
sometimes trumped other structures or markers of time, like biological sleep rhythms. Routines
were established (and broken) based on coordination of care in daily life. Such a phenomena,
where activity demands rather than cultural standards dictate the organization of time, has been
referred to as “occupation-temporality” (Larson & Zemke, 2003; Zemke & Clark, 1996). Data
here revealed how activities of caregiving that demanded completion were especially disruptive,
and/or interfered with experiences or perceptions of control for caregivers. Even in routine tasks,
a subtle change in ability, perhaps impacted by energy or pain, could disrupt the synchronization
or coordination of activities, like when AYAs needed more assistance than was anticipated (think
back to the example of Alonso’s chair rolling down the hall). Ultimately, shared time and
experiences deeply impacted AYAs and their caregivers, stimulating diminished perceptions of
control and negotiations of personal interests or priorities in order to accommodate the
preferences of partners within each dyad.
This examination of participation began with a brief review of activities that consumed
time and energy for AYAs with a SCI and progressed into a discussion of ways in which
opportunities were influenced and experiences were affected by variable contexts. Some of the
activities in which AYAs engaged were expected and are considered “typical” for individuals in
these periods of life; namely, participation in school and time with friends. Other activities,
particularly activities relating to health management, distinguished these AYAs from their peers
and seemingly dislocated them from ideas of possibility – present and future. Thus, data analysis
focused on interactions of AYAs in context to advance our understanding of lived experience in
homes and communities. Given the extent to which effects of SCI are realized in community life,
attention to lived experiences of participation and potential mediators of such provide critical
insight to inform rehabilitation practices.
Life experiences before and after injuries for this cohort of AYAs were differentiated by
the medicalization of their bodies. With SCIs, AYAs were confronted by feelings of
vulnerability and mortality. They also were challenged to manage their health and disabilities
across-contexts. Given such drastic changes, time in rehabilitation included reflections on their
own ideas of purpose and possibilities for themselves going forward. Thus, immersion in health
care became developmental work, where young people looked to gain knowledge and skills to
care for themselves, all the while pushing to see and understand a future in changed bodies and
navigating competing demands and interests in day-to-day life.
Work experience was lacking among the cohort, especially when considered alongside
typical or recommended activities in adolescence and young adulthood. Limited work experience
and responsibilities in the home or community have been considered hindrances to development
of adult roles. Gainful employment and other preparatory work roles (e.g. chores, volunteering)
promote a sense of community involvement, quality of life, and have been associated with
independence in adulthood. However, the majority of the cohort had no formal work experience,
likely as a product of several contributing factors, including social contexts and availability of
work, as well as physical disability. Instead, several AYAs had been exposed to work in informal
economies prior to their injuries, and there were few expectations or opportunities for productive
contributions in their homes and communities. Therefore, all types of “work” experience must be
considered for value and impact on knowledge and skill development across the lifespan,
including social skills and practices of street life that offered protection and a critical source of
income for self and kin communities.
While participants’ experiences “after” injury were seemingly quite different than before,
some of their circumstances persisted, such as systematic factors contributing to neighborhood
violence and marginalization in areas of Los Angeles where some participants lived.
Longstanding social injustices that have been linked to street life and related work in informal
economies were harder on AYAs who had previously depended on their physical strength and
independence for a sense of physical and financial security. AYAs wanted to differentiate
themselves from past lifestyles, but vulnerabilities of living with a disability (e.g. limited income
and/or employment opportunities, reliance on caregivers, inaccessible housing) added to
challenges of adjusting to disability when gaining power by force and earning income through
informal economies were status quo. On the other end of the spectrum were experiences of
individuals in this study, who lived in physically safe and supportive communities. With onset of
SCI and related disability, some families were embraced, friends and neighbors, who initiated
fundraisers, provided childcare and other support, and paved the way for easier transitions to
community life. Thus, examining participation in context pointed to significant aspects of
Analysis of participation in context also revealed tensions among divergent organizations
of time, space, and social dynamics as they overlapped in everyday life. As in examples of
sacrificing sleep in order to have time for school, social activities, exercise, work, and self-care,
excess participation may challenge health, even when participation in and of itself improves
quality of life and supports psychosocial development. Carlson and colleagues (Carlson et al.,
2017) suggested such circumstances may be understood as a “cancellation effect” (p.13), when
increasing participation actually puts the body at risk for injury or health complications.
However, AYAs rarely discussed such risks or trade-offs. In fact, across individual narratives, it
became clear that most AYAs shared aspects of their lives and selves that gave them a sense of
pride or accomplishment. Therefore, more work is needed to understand relationships of
participation and health over time.
Self-care demanded a great amount of attention in daily life for AYAs and their
caregivers, and sometimes, it contested participation in other meaningful life events, like
attending school and socializing with friends. This also extended to limitations of spontaneity in
everyday life, and ways in which AYAs had to carefully plan or calculate their schedules and
activities with caregivers in light of demands imposed by physical and social environments.
Examining such dynamics in context revealed significant changes invoked by SCI and related
sequelae, which distinguished life after injury from before, and seemingly set AYAs apart from
peers without health concerns.
Experiences in health care were dislocating. Acute shock was felt from changes in the
body and drastic shifts in physical and social circumstances (See Chapter 4). Over time, AYAs
adjusted from understanding SCI as a novel issue to framing it as a chronic concern. Given the
presumption that health challenges will persist and evolve across the lifespan, socialization in
care and support to manage emergent needs must be considered a developmental priority and
embedded in rehabilitation goals. From case exemplars, we discerned how health care providers
played a significant role in supporting confidence and adjustment to injury, doing work to
stimulate hope and support a sense of possibility when AYAs experienced insecurity.
Encouraging participation in care not only fostered understanding of SCI, but it could also
generate self-efficacy in day-to-day life extending into the community. Conversely, a lack of
encouragement in health care was seen to be discouraging.
In cases when AYAs were not satisfied with education or participation in care, they
turned to their bodies for knowledge while expressing feelings of isolation, doubt, frustration,
and helplessness. Limited chances to experience possibilities of the body in hospital and
community settings left some AYAs feeling as though they had little control, and without having
models of participation with disability, their sense of future possibilities was stunted. Therefore,
early learning and socialization in health care settings mattered.
Examining the flow of health care from hospital to community settings also shed light on
the impact of place in experiences of participation. Primarily, it is important to distinguish homes
from communities. Home was where many AYAs spent much of their time, but it was also a
place where they experienced decreased participation with fewer activity expectations. Going out
in the community was goal-oriented, often for the sake of activities, but it required extensive
efforts. Unexpected places, like the car, emerged as mediators of participation; cars were a
meaningful and functional place – all at once an extension of the home environment and a place
of community engagement. Therefore, goals beyond rehabilitation must consider unique
circumstances for participating in activities at home, in the community, and in unique spaces
bridging the in between.
Lastly, it was impossible to examine participation without consideration of caregivers.
Intensive caregiver involvement ran contrary to typical developmental patterns, when AYAs
separate from parents or guardians to build independence, or explore their own interests and
autonomy. Like health care providers, caregivers played a significant role in cultivating
opportunities and influencing day-to-day experiences for AYAs after their SCIs. Also, caregivers
escalated levels of socialization for the AYAs through intense, coordinated action to care for the
body and support activity participation. Not surprisingly, more severe injuries indicated more
time spent with caregivers when few activities could be completed without assistance. This was
especially true in the initial time following injuries, but ultimately, requirements of caregivers
depended on activity demands, along with environmental features and personal skills and
expectations of AYAs. Such a shift from primarily experiencing time alone or with friends to
experiencing escalated time with care providers caused a peculiar social imbalance for AYAs.
This socialization also impacted caregivers, but with notable difference: caregivers had more
choice in the matter since they often made commitments to supporting their loved ones but were
not forced to do so, as was the case for AYAs who were suddenly forced to work with others in
light of disability.
Some aspects of the study design limited the analysis. First, the cross-sectional nature of
this study reduced opportunities to observe changes over time and to identify causal relationships
in vivo. However, Phase II participants were followed for up to approximately one year, and
narrative data captured representations of experience beyond present time and place, facilitating
an exploration of circumstantial changes in life from before to after SCI, as perceived and shared
by AYAs and their caregivers. Secondly, methods to capture lived experiences from a first-
person perspective provided unique and critical insights into community life, but aspects of self-
report also presumably skewed towards positive representations. Most participants, especially the
AYAs, seemed largely focused on aspects of their lives that gave rise to pride and feelings of
accomplishment and/or self-determination. Therefore, with regard to understanding a possible
paradox of participation, where increased activity could be a health risk, there was limited data
on perceptions of personal risks or circumstances, which challenged development. Lastly,
member checking was not integrated in the study design, which could raise possibilities for
research bias and/or misinterpretation of data. However, it was determined that member checking
would threaten confidentiality, especially within dyads in the study, when analysis necessarily
integrated multiple perspectives. Instead, strategies of triangulation were applied to support
analytic rigor, and Phase II participants were engaged in a review of stories they shared through
co-construction of their visual timelines.
Human development is dynamic, and it occurs in response to past and present interacting
forces of biological, environmental, and historical natures (Bronfenbrenner, 1977; Bruner,
1990a; Elder, 1998; Evans, 1995; Nelson et al., 2014; Rutter, 2007; Sameroff, 2010). With a
focus on sociocultural experiences (e.g. Bronfenbrenner & Morris, 2007; Bruner, 1990a; Elder,
1998; Rogoff, 1997), there is growing appreciation of the multidimensional influences of
experiences on change and growth that accumulate across the lifespan. Experiences must be
examined within their particular circumstances, and analysis must integrate multiple layers of
With analytic influences from developmental theories, this multi-pronged analysis of
participation shed light on how activity and participation can be understood within context, and
furthermore, how such experiences may influence factors relating to psychosocial development.
Understanding participation for AYAs with a SCI and their caregivers required thorough
attention to context, which shed light on interests and priorities, as well as constraints and
affordances experienced in daily life. Lived experiences among this cohort included several
common themes that distinguished them from what is known about “typical” experiences during
adolescence and young adulthood. Interactions of temporal rhythms, social dynamics, and
physical environments were salient constructs in the framework to understand how opportunities
and experiences take shape in daily life.
Given trends of decreasing lengths-of-stay in inpatient care, it is critical to understand
how action is influenced and perceived in home and community life in order to support work for
adjustment to injury and recovery that are critical to rehabilitation. Rehabilitation after SCI is a
developmental endeavor for AYAs, marked with abundant opportunities to facilitate positive
experiences. However, attention must be given to individuals in context – the knowledge, skills,
and cultural practices life experience has generated to date, the impact of a changed body on
sense of self and opportunity, and the influence of historical, social, and physical constructs on
opportunities and meanings of experiences after injury.
Chapter 7: Risk and Vulnerability
It feels necessary and appropriate to summarize this work under the construct of
vulnerability. Experiences of the AYAs living in changed bodies after SCI indicated ways in
which opportunities were impacted by physical and social environments, and actions were
negotiated with caregivers. Furthermore, disrupted participation in activities at home and in the
community during adolescence and young adulthood is likely to impact one’s sense of self and
diminish opportunities to develop skills for progressing to adult roles – indicating vulnerability
linked to SCI and extending across the life course. Thus, in the work to adapt and engage in day-
to-day life after SCI, young people are exposed to significant risks and challenged to see a way
through. In this closing chapter, themes of vulnerability will be revisited and further explored,
considering nuanced examples of vulnerability as it was felt and responded to in the lives of
AYAs and their caregivers after SCI, situated in contexts spanning time and place. Looking
closely at lived experience, this final review will focus first on findings of vulnerability as it was
felt in day-to-day participation for AYAs and their caregivers, then as it related to research
engagement, and finally how it extended to my own experience as a researcher.
As in the flow of findings, this discussion begins with relationships to the body. Body
image was a significant concern and focus of attention among AYAs in the study. Sudden onset
of disability disrupted ideas of identity and self. In what were likely strategies to minimize
stigma or loss of social capital, the AYAs shared many examples of ways they focused on image,
including superficial representations of self expressed through cosmetics or clothing styles.
Beyond changes to body functions and muscle tone, adapted equipment including, but not
limited to, wheelchairs were felt to be an extension of self and body. They drew attention to
difference, and therefore, the appearance of wheelchairs was seriously considered for how AYAs
thought they represented themselves and their abilities to others. As a result, wheelchair models
and features or styles mattered, even at the expense of function or safety.
Sharing a story from his first time to try bowling after his SCI, one AYA was proud of
the fact that he did not use bumpers or a bowling ramp for the ball. He said, “Yeah, I just rolled
up and just did it naturally. I didn't want to- I didn't use bumpers either. I didn't want to. I didn't
want to feel like a baby or nothing.” Whereas attention before injury was something he desired
and found flattering, attention after injury provoked insecurity. Talking about time spent in
public, he shared:
You're always wondering, like, are they just staring at you, thinking like - not even
staring at you, like what are they thinking? You're always wondering what someone else
is thinking, like what anybody, even people I don't even know. I'm always wondering,
like, what do they think of me when they see me?
One AYA was preparing for graduate school interviews and was planning to purchase a
new wheelchair in order to project a “professional” look. She said:
I want it to look professional, though, because I’m probably going to be doing a lot of…
interviews for [grad] school around this time next year, and I don’t want to roll in with a
pink and white chair. They’re going to think I’m, like, a child. I want a professional one,
like black or something. There’s a lot of factors to consider.
This AYA also described times when she refused to use features of her wheelchair, like anti-tip
bars, because she thought they made her look more disabled. In two separate instances, she fell
in her chair without anti-tip bars, resulting once in a cut on her head and another time in bruises
on her body. Still, she did not want to add the anti-tip bars to her chair. Across the cohort, AYAs
were vulnerable to scrutiny of their bodies and abilities, and social judgment (perceived or
realized) impacted their sense of self and attention to image.
Risks of, and in, Communities
Continuing discussions of vulnerability in relation to social worlds, communities are
often considered to be positive in rehabilitation settings for ways they generate support. Data
indicated various ways AYAs learned about their bodies and opportunities in social experiences,
yet there were mixed reactions to disability communities. Peers with disabilities (in person and
online) were only mentioned by AYAs in some cases. Caregivers emphasized an essential value
of meeting peer mentors and learning from their experiences, but AYAs appeared to vacillate in
and out of disabled identities and communities with mixed emotions, indicating perceived risks
of associating in disability communities. Most of the participants described having limited
experiences with persons with disabilities before their injuries, and some even had negative
assumptions about people in wheelchairs. After their injuries, they were fighting the stereotypes
they themselves had previously accepted or even perpetuated.
Beyond perceived risks of stigma by association, broader social environments also related
to vulnerability, particularly for AYAs who lived in communities with high rates of violence and
few positive resources. Acts of violence, primarily gunshots, are the third leading cause of SCIs
in the United States, and the second leading cause for individuals under the age of 30 (National
Spinal Cord Injury Statistical Center, 2016). While acute rehabilitation for SCIs from gunshots
may not significantly differ from non-gunshot SCIs (McKinley, Johns, & Musgrove, 1999;
Putzke, Richards, & DeVivo, 2001a, 2001b), life after violently-acquired SCIs can present a
range of unique challenges, including cultural changes and social isolation (Devlieger et al.,
2007). In this study, participants’ injuries resulted from a range of causes, but data from AYAs
with injuries from violence illustrated unique vulnerabilities.
Applying a framework from Frank (2013), this analysis examined narrative data from a
subset of participants, who were violently-injured and had a history of gang involvement or
related “street” life (Mattingly, 2014), in order to identify arcs of experience and influences on
perspectives after SCI. These AYAs (n=5) were all male, Black, Hispanic, or mixed-races and
ethnicities, and they primarily lived in communities marked by patterns of violence and
discrimination. Data were specifically analyzed to identify and unpack individual perspectives
emerging during life after a devastating injury (Mattingly & Lawlor, 2000).
According to Frank (2013), illness narratives typically align with one of the following
patterns: restitution, chaos, or quest. Restitution narratives are dominant, with individuals
focusing on treatment for eventual cure under the assumption that illnesses (or in this case,
disabilities) are transient. Examples of this resolve appear, at least temporarily, across several
cases, including in this story from one of the AYAs who did not believe the prognosis offered by
his doctor. He said:
[The doctor told me], “most likely you’re not going to walk.” …I don’t believe it because
so many people, they say they got shot in the neck, and… the doctor told them they’re
not going to walk, they’re not going to feel with their hands, they’re not going to be
nothing. I just saw that same person walking and standing like, “Damn! Get out of here
with that bullshit. Don’t be saying shit like that.” … I feel like [God’s] going to give me
back my legs as soon as He sees my heart changed.
This AYA experienced isolation after his injury, and he engaged in few activities while holding
out hope for recovery of his physical strength and functional independence.
Chaos narratives are in many ways the opposite of restitution – they occur when
individuals with illness or injury are caught up in immediate needs or concerns and feel as if they
have little control over the storyline. Returning to the story of Alex’s attempts to engage in
school (See Chapter 6), effects of locating oneself in a chaos narrative are apparent:
This year [was] supposed to be graduating year for me, but nope, I'm still in the ninth
grade… My situation…keeps me back from a lot of stuff. If something happens, I got to
stay home. I have accidents at school, stuff like that. It would just never be a day where I
could just be at school all day, like in peace. There's always something happening, or
something like that.
Data from this case indicated ways in which he accepted hardships as they came but felt little
power or control to avoid them. It was difficult for him and his mother to understand new ways
to control his body and approach meaningful participation in community life.
Lastly, in quest narratives individuals assume control over their stories and try to invoke
positive change in order to make good of their situations. Examples of this were scattered
throughout cases of AYAs with admitted histories of street life, and this narrative feature really
distinguished the subset of participants injured by gunshot from the AYAs with other
mechanisms of injury. Many of the young men felt their lives had been spared “for a reason” and
they were “trying to better” themselves or “become something” by focusing on goals for
participation in formal roles, such as education and gainful employment.
In the days, weeks, and months following a SCI, this subset of gunshot survivors was
separated from their homes and communities as they received necessary medical care and
rehabilitation to address impacts of their SCIs. During this time, they described a range of
experiences, which challenged conceptions of self, and at various points, data from these
participants resembled each one of Frank’s narrative forms. Quest narratives were dominant in
three of the five cases of SCI from gunshot wounds. Where some caregivers feared their loved
ones had been “lost to the streets,” the injury was described as a chance to start fresh, to re-create
themselves, and in doing so, to live a safer and more meaningful life. However, cultural
influences, community resources, and limited knowledge of future possibilities (Mattingly, 2010)
challenged this resolve.
In spite of apparent risks, three of the five AYAs injured by violence returned home to
the communities where they had been shot, and of the two that lived elsewhere both still
expressed ties to past communities. In an individual interview, one of the AYAs who moved
I like this area. This is cool. It’s suburban. Like it’s a big change for me. Like this is a
clean ass area compared to my old area. I used to live next to an alley. You fight,
everything, you know, everything. I kind of want to go back, but that would be foolish. I
only want to go back because it’s like my home. You know, I grew up there. I know the
streets like the back of my hand. It’s a part of me. It’s attached to me. I don’t know man. I
feel like if I don’t go back one day I feel like I’m betraying it. You know? I don’t know,
that’s just how I think, you know. That’s where I grew up most of my life.
This narrative revealed ways in which community was what made “home,” and communities
were deeply linked to identities. As such, it was not always desirable to escape, even if it seemed
“foolish” to go back. Perhaps similar to research with individuals transitioning out of
homelessness (e.g. Henwood et al., 2013), neighborhoods hold critical social and functional
value, even when situated experiences have been traumatic. Data revealed ways in which some
AYAs were committed to maintaining ties to their communities after their injuries, even in the
threat of violence or temptations to return to what one AYA described as the “wrong way[s]” of
This research adds to conversations about what disability, and specifically SCI, can mean
for young men coming from the streets. For these AYAs with violently-acquired SCIs,
rehabilitation was a type of moral endeavor, complicated by functional abilities and social
influences. Where some AYAs were previously “lost to the streets,” (a caregiver speaking about
her son before his SCI), these devastating injuries were sometimes understood to be a chance to
start fresh, to re-create one’s identity, and in doing so, to live a more safe and meaningful life.
However, a lack of experience and support relating to future ambitions (e.g. self-care, work) and
occurrence of these injuries in the midst of critical developmental periods left these AYAs with
few resources to create or maintain changes to which they were oriented.
In narrative analysis, the arcs of a storyline can indicate how experiences are internalized
and acted upon. Since SCIs often result in chronic disability (National Spinal Cord Injury
Statistical Center, 2016), restitution narratives may disrupt action and development in cases
when individuals hold back from activity engagement while waiting to “get their strength back.”
Chaos narratives may also challenge positive adaptation and psychosocial development after
SCI, since they indicate feelings of existence in states of unrest, when individuals have difficulty
identifying opportunities to take action or control their experiences. Therefore, considerations of
how quest narratives are cultivated and supported can have important implications for
application in care and community environments. Quest narratives may be acted on to generate
productive action towards desired purpose (Frank, 2013; Mattingly, 2010)
However, it is critical to consider the fluidity and fragility of storylines, particularly for
individuals with limited resources who return to familiar communities. Broad sociocultural
factors mediate opportunities and barriers in daily life.
Compounded Risks – Young and Disabled
Moving to risk and vulnerability as identified in narratives across the cohort, challenges
of being young and disabled were striking. Risk-taking is a normative activity for AYAs,
especially before full maturation of the frontal lobe, which happens around age 25, and thus
encompasses these age periods. Alcohol and drug consumption may be approached casually and
well-accepted among peers, in spite of potential health risks. Such activities can also be part of
developing identity and autonomy since they are often used to explore boundaries of
independence. Many AYAs involved in this study said they had consumed alcohol and/or
marijuana before their injuries. These activities were linked to social relationships and leisure
time, and in spite of the value and risks of such things for AYAs, participants reported few, if
any, opportunities to learn about expected changes and elevated risks for individuals with SCIs
who wanted to enjoy alcohol, marijuana, or other drugs after their injuries.
Furthermore, AYAs also said it was difficult to access information about sexual activity
and intimacy. For example, a male AYA described how it was one of the first things he wanted
to know relating to his SCI, yet health care providers initially deflected his question. In one
interview, he said:
[Sex] was the main thing I was worried about…. They used to just say, “You don’t need
to focus on that right now.” They just kept telling me, “You don’t need to focus on that,
focus on getting better and all this.” I’m like, “I still want to know.”
Furthermore, he reported that he did not receive any practical information until nearly a year
after his injury in a follow-up appointment with his urologist. Another AYA was interested in
starting a family, but nearly three years from the time of his injury, he said no doctor or health
care professional had talked with him about fertility. He was unsure whether having a biological
child would be possible, and he seemed reluctant to ask.
Along with AYAs, several caregivers (mothers, girlfriends) discussed sex and fertility,
almost always as unknowns. There were also questions about sexual arousal and positioning for
intercourse. Some AYAs had sexual experiences before their SCIs, but in at least one case, sex
was a new experience after injury. In typical scenarios, AYAs learn about sex and intimacy with
peers, receive information in school, and are inundated with material on social media and the
Internet. For these AYAs with disabilities, resources were scarce. One AYA described going to a
class taught by one of the therapists in rehabilitation, but it was difficult for him to relate to the
material: “So, basically it was like an old 1890 porn of a handicapped man having sex. It was
kind of weird. I’m like, ‘I’m definitely not going to do it like that.’” In spite of misaligned
content, he learned strategies to achieve and maintain an erection from the class, but this only
addressed one aspect of being sexually active.
In the case of the AYA without previous sexual experience, physical intimacy was
intimidating. In one interview, she shared:
I was a virgin, and also on top of that like, I felt even more vulnerable because of my
accident and all. [Dating, sex] was like, really- it was like a big deal… I was picturing it
to be like horrible because I was like, oh my god, my legs are going to fall off. Like, I
have osteoporosis, I'm going to like… break… I just need someone who's like, gentle
and… puts me first… what if someone just left me there?
A lack of knowledge about what to expect from her body during intercourse caused her to wait
longer than she may have otherwise wanted to before dating post-injury. When she eventually
had a trusted partner, sex was still difficult:
I had to make sure he knew to be, like, really careful. But it was the worst experience of
my life. I was so traumatized, and I was like, ahh- But since that day, it's been better.
Like way better. I'm not traumatized anymore.
This complicated scenario highlights intense vulnerability relating to sex and disability. Fear of
physical intimacy was a barrier to participation in dating, and intercourse was a time when she
knew she would be completely exposed and vulnerable. She considered the possibility of
someone having intercourse and then just leaving her, naked and alone, unable to dress herself or
transfer without some initial assistance. She also feared the activity would be too hard on her
body, wondering if her legs might “break.” It generated an immense amount of stress, and even
with a trusted partner, was still a traumatic experience.
A lack of knowledge made AYAs more vulnerable to abuse and other detrimental
impacts of these activities that are so often part of social participation in adolescence and young
adulthood. In spite of the fact that risk-taking is considered “normal,” most AYAs in the study
indicated that sexual activity and alcohol or drug use were rarely, if ever, addressed in
rehabilitation. The lack of knowledge seemed to compound risks and vulnerabilities for these
AYAs, especially as they tried to re-engage in community life.
Experiences of vulnerability extended to AYAs and caregivers in everyday moments,
both large and small, as autonomy was dispersed among two (or more) bodies. Across lived
experiences, there was a constant push-and-pull of control. Close analyses of stories about an
activity or participation invoked a metaphor of playing catch, where control was tossed back-
and-forth through each responsive action. Take, for example, an instance when one AYA needed
a drink; he did not have the strength or coordination to retrieve a glass of water himself, so he
asked his caregiver for help. In doing so, he expressed a desire and directed a response, but in
waiting for that response, he had limited control of the situation. He waited without knowing
whether his caregiver would respond, how quickly she may do so, and how she may satisfy his
request. Thus, in that instance, the caregiver had control; she chose whether she would respond,
how quickly she would do so, and what she would bring him. However, to respond also meant
giving up what she had otherwise been doing. She sacrificed control of her schedule to
accommodate his needs. In such sequences of action, it was hard to ultimately identify who had
control, as it was likely negotiated in the interpersonal relationship, rather than located with
either individual involved at any given time.
Across cases and stories, such negotiations of control posed threats to AYAs and their
caregivers, even when relationships were rooted in respect and compassion for the other. For
AYAs, the threat was to their well-being and their sense of self – would caregivers be responsive
when needed, and would caregivers still treat them with respect? For caregivers, threats also
related to sacrifices of their own developmental agendas, like cases where caregivers put school,
relationships, and professional pursuits on hold to be available for their AYAs. Although these
seemed like sacrifices, caregivers largely described them as expressions of love and
commitment. Still, many caregivers felt immense pressure, like this caregiver who was frustrated
by family dynamics. In a group interview, she said:
One thing for me is that I'm literally the only person that's taking care of Gordon. It's no
one else. His mom lives [far away]. His dad just got out of jail. So, it's like I'm the only
one, and his grandma is- she's not old, but she could barely see. So, she's too old to take
care of him in the important way. So, I'm literally the only person… And then, as far as
like when it comes to his parents stepping in, they don't. And so, it's like, if I wasn't here,
then who would do anything? How would that work? And so, that is one of the biggest
In such scenarios, it was not only the AYAs’ needs, but also the lack of other support that placed
a burden on caregivers, and as a result, they experienced stress, vulnerability, and some loss of
autonomy even when they were not the ones with the injuries. On top of the responsibilities they
felt for AYAs, caregivers also had personal responsibilities, social obligations and interests,
professional roles, and other agendas that factored in to daily life and influenced actions and
experiences over time.
Caregiving ultimately involved precarious management of risks and benefits – risks of
deeply sharing one's life with another and benefits of deeply sharing one's life with
another. Commitments to coordinating lives for caregiving seemingly required vulnerability,
along with a reprioritization of time, energy, and interests for each person involved. Narratives of
caregivers examined alongside narratives of AYAs revealed complex realities, where life
experiences were continuously re-negotiated and vulnerabilities were deeply felt by everyone
involved in daily life (See Chapter 5).
Ethics of Narrative Work
Ultimately, vulnerability was pervasive across the data corpus – felt and exacerbated in
and by day-to-day life activities. An unanticipated finding in the research was ways in which the
research activities also invoked vulnerability. Specifically, the narrative approach proved to be
more than “just” a data collection tool. Research engagement provided a space for the
participants to feel heard, for their perspectives to be valued, and caregivers described
participation in research as a time to care for themselves, which was a serious concern when the
In Phase I of the study, AYAs with a SCI and their caregivers participated in individual
and group interviews to discuss their everyday lives and experiences relating to participation in
rehabilitation and community life. Group interviews were structured as collective narratives
(Jacobs et al., 2011; Lawlor & Mattingly, 2001; Mattingly et al., 2002), where the participants
could share stories about personal experiences, expanding on narratives from individual
interviews and generating a group (or collective) narrative about life with a SCI as an AYA or
caregiver. Collective narrative
practices draw from Winnicott’s ideas for creating a “holding
environment” (Applegate, 1997; Kahn, 2001; Winnicott, 1990), where a therapeutic space is
cultivated with ground rules to facilitate trusting, supportive relationships, and growth.
Collective narratives function from a fundamental belief that lived experiences generate
expertise; therefore, in research, the intent is to seek expertise of participants, rather than to
assume that they need help or support, as in the traditions of therapeutic group practices.
Knowledge was shared by way of stories, spanning time and place, and participants were
encouraged to focus on particular moments or experiences, which cultivated rapport among
participants when peers identified ways to relate to one another. In the context of this study, I
met individually with each participant prior to the group interviews to develop an initial
relationship and discuss expectations. Confidentially and mutual respect were emphasized
before, during, and after each meeting. Additionally, time was managed to ensure each person
Developed by Lawlor and Mattingly in their longitudinal ethnography, “Boundary Crossing” (R01 HD38878).
The tradition was continued in Autism in Urban Context project (R01 MH089474, PI: Olga Solomon, Co-
Investigators: Mary Lawlor, Larry Yin, Marie Poulsen, Marian Williams, and Sharon Cermak).
would have time to speak. During the group meetings, individual stories and contributions varied
significantly, but participants found pieces in one another’s experiences that they could relate to,
such as having little space to grieve, feeling manipulated, and developing new ideas about
Looking specifically at caregiver experiences in the research, data provided compelling
evidence for the extent to which commitments of confidentiality and opportunities to listen and
be heard among peers, as well as recognition of expertise in lived experiences, served unmet
needs in their lives. Narratives suggested great tension between attending to personal needs and
the needs of their loved one with a SCI. In the face of such challenges, caregivers often
compromised their own desires, and they described few (if any) confidants with whom they
could discuss their experiences without fear of judgment and negative consequences to
relationships in kin communities. As a result, caregivers felt fatigue and isolation. However,
emic reflections on participation in this research, particularly in group interviews, indicated that
narrative work created space for forging trusted relationships and finding solace. In this way, the
research incidentally provided a desired form of self-care for caregivers.
This work contributes to growing attention to the power of narrative in research and
health care practices (e.g. Charon, 2008; Frank, 2013; Lawlor & Mattingly, 2001). Furthermore,
these findings indicate a moral weight for researchers, especially when research participation is
identified as an important and unique occupation for informants. Participants in the caregiver
group expressed concern in the final meeting as they underlined the unique value of the group.
One participant said, “I've never told my job, didn't go around my neighborhood telling this
story. I just tell it here…” Speaking directly to me, she continued:
If you ever need us, don't hesitate to call us… Because we need you, too... I don't know
now, which way do I go? It's just like we need you, not just to eat… Yeah, but we need
you. I don't know what to do next… This is new for all of us. And I just don’t know what
we’re going to do…
Another caregiver went on to say:
You know, we could talk to our friends, our family, but it's different. It's not the same,
because they might see what we're going through, but they don't know actually what
we're going through.
The caregiver perspectives underlined an obvious utility (and tradition) of narrative practices for
healing, but these came coupled with ethical tensions of working with underserved and/or
neglected populations when the research ended and no equivalent opportunities were offered.
The collective narrative format seemed to generate a space for participants to create or
enact a necessary environment. Narratives suggest great tension between attending to personal
needs and the needs of their loved one with a SCI. Furthermore, data from caregivers provided
compelling evidence for the extent to which commitments of confidentiality and opportunities to
listen and be heard among peers (who are otherwise uninvolved/unconnected to their lives)
serves an unmet need in caregivers’ lives. These research participants transformed the research
space into a care community.
Data indicated potential for narrative work, particularly in a collective format, to create
space for forging trusted relationships and finding solace when environments are created with
thoughtful rules or expectations (See Figure 4 for image of caregiver group). However, ethical
considerations emerged when lines between research and interventions were blurred in
individual experiences. Given the time-limited design of research, providing such a valuable
space without plans to sustain was difficult for participants who found great meaning in the
research. This work contributes to growing attention to the power of narrative in research and
health care practices (e.g. Charon, 2006; Frank, 2013; Lawlor & Mattingly, 2001). Furthermore,
these findings indicate a moral weight for researchers, especially when research participation is
identified as an important and unique occupation for informants.
Figure 4 - Caregiver Photo
Caption: Image taken at the caregivers’ request after their second (final) group interview in order to
commemorate the time they spent together. Body language, including large smiles and the physical
embrace of one another, suggest a sense of happiness and comfort in a newly-formed community. The
caregivers even shared in holding the tablet used for one caregiver, who had participated virtually.
Note: Image blurred to protect anonymity of caregivers, and one participant is cropped out based on
preferences expressed during consent.
Personal Vulnerability as a Researcher
As indicated earlier in the writing (see Chapter 3), I maintained a reflexive stance in the
research process, and I allowed myself to deeply engage with participant experiences. Doing so
brought richness to the experience, but also vulnerability for myself as a researcher. For
example, coming to this research, I never expected to be confronted by the death of a participant.
Technically, his death occurred during an inactive period of research (after completion of Phase
I, and before any opportunities to enroll in Phase II), but when participants were still contacting
me with updates as they desired. As such, I obtained a snapshot of a life that could be (and was)
analyzed alongside all of the other cases. However, there was a significant difference. For eight
of the nine cases (AYAs and their caregivers, as appropriate), I struggled with making sense of a
cross-sectional glance of constantly shifting lives, including how to manage updates when they
were provided. For the ninth case, I was instead caught with understanding an abrupt end.
Approaching a population of AYAs with SCIs, I designed the study to understand
experiences relating to early adjustment to life in the community with SCI, but situated in a long
life trajectory. I collected data under the assumption that life after injury was often a “new
beginning” – welcomed or not, and I privileged a developmental lens because I believe(d) the
participants were sorting out early life experiences. In the case of Alonso, a bright young man,
whose narrative reflected optimism and drive, I was excited by ways he and his girlfriend
seemed to be changing the course of his troubled life, and I was eager to observe how their
experiences in the community would unfold post-SCI.
During Phase I, I learned how Alonso overcame many obstacles in life: growing up in a
violent community, experiencing chronic poverty, dropping out of high school to earn money for
himself and his family, fighting drug addiction, and eventually enduring gunshot wounds that
damaged his spinal cord and multiple organ systems. He spent several months in intensive care
to achieve a stable medical condition, and yet, he and his girlfriend were hopeful about the
future. With two children (one from the mother's previous relationship and one shared), they
were planning a life together and figuring out ways to blend their families in ways they had
never done before.
As we wrapped up Phase I, I was excited to follow their journey into Phase II, as Alonso
and his girlfriend, Miranda, expressed great interest in the research, openly disclosing intimate
details of their lives during our interviews. Then, I got the call from Miranda: Alonso had
suffered a stroke, thought to be a result of a blood clot from his legs that moved to his brain.
Several days and bleak updates later, Alonso died in a hospital after showing no signs of
recovery. Making the situation worse, his funeral plans were necessarily delayed by the family's
efforts to raise funds for a ceremony and burial.
I was rocked by grief and anger. This man had lived his life in a community that was
primarily noted for violence. His death made him yet another statistic. When I searched online
for an obituary, I only found his name added to the LA Times Homicide Report. The post listed
his name, age, and the location of where he was shot. It then stated, "Do you have information to
share about the life of [Alonso]? The Homicide Report needs your help. E-mail us at…" This
haunted me. A life lost, known only to family and acquaintances, and a family who could not
afford the exorbitant costs required to bury their loved one. In one of many tearful updates, his
girlfriend described how she often thought of him, just waiting in the morgue until they could
raise funds for a funeral. I found myself swirling with how to capture the end of such a striking
I attended his visitation service. From what I remember, I was the only White person in
the room. I was also the most formally dressed. His girlfriend and family all wore shades of
white: jeans, slacks, t-shirts, and tank-tops. I was in a dark lace dress, the same one I had worn to
my uncle's funeral only a month earlier. As I sat, noting my “otherness” and rattled by the
injustice of it all, Miranda embraced me and initiated introductions with Alonso's family, who
also greeted me with hugs. Miranda then pulled me outside to share tributes and updates. As I
came to know, Alonso had casually, unassumingly, shared some of his last wishes with his
family over a recent dinner. He wanted his family to know that in the occasion of an untimely
death, he did not want everyone mourning in black. Instead, he asked for a party. At the time,
Miranda said she had been upset, unsure of why he would say such a thing, but in the wake of his
sudden death, she believed he had sensed trouble. So, his family scraped together enough money
to hire a mariachi band, and they wore white in celebration of his life. It was profoundly
beautiful and tragic.
As I try to synthesize findings from the data corpus, I feel myself slip into different
modes of analysis, typically at extreme ends of a spectrum. On one hand, I feel caught by the
endless challenges the AYAs face, and I feel overwhelmed by social constructs that contribute to
their hardships. How can I, we, fix something that has been broken for so long (assuming there
was ever a time when it was whole)? On the other hand, I feel a pull to romanticize relationships
and experiences captured in the research. I want to highlight the silver linings and describe the
goodness in narratives. I want this study to have a happy ending, but reality is not always so
kind. Alonso’s death brought forth great sadness, but it was certainly not the only time when I
was dislocated by the everyday realities of the study participants. Their stories and circumstances
enter my consciousness often, and they will continue to shape my work going forward. The
spectrum of good and bad is what comes of situating oneself close to experience; it is messy and
dynamic, and individuals are continuously trying to make sense of it all. Working at both ends of
the spectrum may even be like Jackson’s complementary poles (M. Jackson, 1998) – the good
must be taken with the bad, strengths taken with risks, and challenges with affordances. Life
experiences cannot be neatly categorized, and findings must be understood in situated contexts.
My approach to the research, including ways in which I allowed narratives and
observations to shape research foci, strengthened my position as a researcher in that I was able to
observe lives as they were lived without constraining my view towards specific domains, like
ADL completion or technology use. This approach also presented challenges in that I observed
and felt the extent to which post-injury experiences could not be separated from broader social,
temporal, and developmental landscapes. Data were rich, complex, and highly nuanced within
individual cases and dyads, and without the work to get close to participant experiences and
deeply explore their perspectives, I would have missed important lessons, especially as they
related to identity, participation, and development.
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Appendix 1: Narrative Interview Guide for AYAs
Questions for AYAs with a SCI Domains to be Probed
Tell me about yourself... / your family…
orientations outside of SCI
Can you tell me about how your SCI happened?
When was your spinal cord injury?
Nature of injury, coping process
(is it raw/close, remote,
otherwise), sense of time,
emotional relationship with
What rehabilitation did you take part in after your injury?
Can you tell me about a positive experience in your
Was there anything you felt was missing?
What was the most helpful?
Have you had any providers who you’ve really liked or
appreciated? What did you like about them/how you worked
What were your goals? Who decided those?
What was it like when you first went home after rehabilitation?
How did you prepare? Who helped you?
Can you tell me about a recent visit with a health care provider
when an important decision was made? Is this how decisions
are usually made? Was there a time that has been different?
satisfaction with services,
coordination of care, sense of
participation and control in health
Can you tell me about your day today/yesterday?
(compare weekday v. weekend days, as appropriate)
When was the last time you left your home?
Can you tell me about something fun you have done lately?
What is hardest for you?
What is something you’re proud of?
Daily routines (care management,
description of time use,
satisfaction with daily life
What has changed since your SCI?
Reconstruction of self (physical,
emotional, social, identity)
When did you first know what a SCI was?
How did you learn about your SCI?
Can you think of a time when you’ve had to explain your SCI to
someone? How did it go?
Have you met anyone else with a SCI? What was that like?
What would you tell a friend if they also experienced a SCI?
Can you tell me about a time when someone has been really
supportive of you since your injury?
Support network, opportunities for
learning/co-learning, sense of
hope, illness experience, peer
In the last week, have you wanted to do something but then found
it to be difficult? What did you do?
When is the last time you tried something new?
(psychosocial, physical), problem-
solving skills, awareness of
What? Why? How did that go? resources, self-efficacy,
confidence and curiosity, life
What are your goals now?
If we had this conversation next year (or 5 years) from now, what
do you think/hope would be different?
Long-term goals, acceptance of
Who have you talked to in the last week?
How have you talked with them (in person, social media, text,
Do you have friends you don’t talk with anymore? Why?
Social network, type and quality of
social interactions, impact of
injury on relationships and
What equipment do you have? Anything you have but don’t use?
What types of technologies do you use? Why and how?
Are there any types of technology you wish you could use
because they would allow you to do something you currently
have difficulty with?
What would make access to technology easier?
access to technology/resources
Have you ever been part of research before? What was that like?
How do you learn about your injury?
Awareness of research practices
and the generation of knowledge,
personal experiences in research
Appendix 2: Narrative Interview Guide for Caregivers
Questions for Caregivers Domains to be Probed
Tell me a little about yourself...
occupations, self-identity (is this
unique from caregiver role?)
If caregiver is part of biological family: Can you tell me a little
about your family?
If not family: Tell me about your relationship with [AYA]…
Who is identified in family unit
(relations or no), cultural
influences, network of caregivers
What was it like when [AYA] was first injured?
When did you first identify yourself as a caregiver?
Were you involved in [AYA’s] rehabilitation? How?
What do you assist [AYA] with in his/her daily life?
Does anyone else help [AYA]? If so, what do they do?
How do you determine who helps [AYA] with what?
Perceptions of caregiver role,
locus of control, caregiver
network, negotiation of roles,
participation in health care
Who have you talked with about [AYA’s] injury?
How have you learned about SCIs?
Support network, opportunities for
How has your relationship with [AYA] changed over time?
Early relationship (pre-injury),
evolution of relationship over time
Can you tell me about your day today/yesterday?
(compare weekday v. weekend days, as appropriate)
Daily routines (care management,
occupations), range of
Who have you spent time with in the last week?
Have you spent time outside of the home in the last week?
Has [AYA’s] SCI affected your relationships with
Social network, community
Do you feel caring for [AYA] has affected your health in any
Caregiver well-being, health care
utilization, multiplicity of personal
How has your life changed since [AYA’s] SCI?
What goals do you have for yourself/your family in the next
year? Five years?
Who makes the primary decisions in health care encounters?
What would you like other families to know whose child has just
experienced a SCI?
Long-term goals, sense of hope,
acceptance of general prognosis,
family coherence and adaptation
Appendix 3: Example of a Visual Timeline
Caption: This cross-sectional snapshot of a
participant’s visual timeline shows how some
stories dated back to time even SCI and spanned
topics including housing, education, health care,
family life, and community participation. Details of
each entry were cleaned, and the complete timeline
was not printed in order to protect anonymity.
University of Southern California Dissertations and Theses
Optimizing participation of military service members with chronic symptoms after mild traumatic brain injury
Artistic seniors: healthy aging through creative programs
Building personal wellness communities: meaningful play in the everyday life of a network society
Centering impact, not intent: reframing everyday racism through storytelling, participatory politics, and media literacy
Clinical trial availability for adolescents and young adults with cancer
SciFest and the development of 21st-century skills, interest in coursework in science, technology, engineering, and mathematics, and preparation of Irish students for a globalized Ireland
The pharmacokinetics and pharmacodynamics of vincristine in the adolescent and young adult population compared to younger patients
Voices from within: perceptions of community youth orchestras and musical identities of child musicians
Identification and characterization of adult stem cells in the oral cavity
The effects of wisdom-related personality traits on caregivers’ health: an application of the resilience model
Effect of mindfulness training on attention, emotion-regulation and risk-taking in adolescence
Creating a community of practice: serving student veterans in higher education
Cross-cultural adjustment: examining how involvement in service-learning contributes to the adjustment experiences of undergraduate international students
Noradrenergic mechanisms of arousal-enhanced memory selectivity
Collaborative instructional practice for student achievement: an evaluation study
Activity engagement of young adults with autoimmune arthritis: a multi-method approach
Inequalities of care: the practices and morals of transnational caregiving
A neuropsychological exploration of low-SES adolescents’ life goals and their motives
Socially assistive robots
A comparison of three different sources of data in assessing the adolescent and young adults cancer survivors
Situated experiences: a qualitative study of day-to-day life and participation of adolescents and young adults with a spinal cord injury and their caregivers
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