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Raising special needs: an evaluation study of respite care for medically fragile children living with autism and other illnesses
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Content
Running head: RAISING SPECIAL NEEDS
RAISING SPECIAL NEEDS: AN EVALUATION STUDY OF RESPITE CARE FOR
MEDICALLY FRAGILE CHILDREN LIVING WITH AUTISM AND OTHER ILLNESSES
by
Elvia L. Espino
A Dissertation Presented to the
FACULTY OF THE USC ROSSIER SCHOOL OF EDUCATION
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF EDUCATION
December 1, 2018
Copyright 2018 Elvia L. Espino
RAISING SPECIAL NEEDS 1
Dedication
To my incredible son, Alex, you are the epitome of astonishment. You give me hope and are my
fuel in everything I do. This incredible honor is your ticket at a chance for a much better life
than I had; I want you to use it.
Mr. Espino, my husband, my rock and my #1 fan. You held me tight, you cried with me, and
you encouraged me every step of the way. All of the extra work shifts were not in vein, I
promise.
This is for us, Cheers!
Lastly, to every kid who was dismissed and or labeled, “At-Risk” by a school system this is your
proof that they are lying, you can do it! It does not matter what you are facing today, or what
your last name is, you can do it if you are bold enough.
RAISING SPECIAL NEEDS 2
Acknowledgements
This journey could not be possible without God’s favor over my life. God, I am humbled
you chose me and I am eternally grateful for your grace and mercy to carry me through this 15-
year voyage. This dream was planted as a young girl during my high school internship. For me
the dream was a means of creating a different life experience for not only me, but also my
legacy. Without faith, this dream would not have survived. I wish I could have a list of high
school counselors or teachers that impacted me during my formative years but the truth is; there
was not,”1.” Sadly, this is all too common in underserved communities in America.
In order of impact (entering my life) are the following people I wish to thank:
Mom and Dad, I saw your hard work. Thank you for teaching me how to smile through
the tears. Mom, you never gave up no matter how hard you had it and I was watching you. My
persistence definitely comes from you. I saw you race between two and three jobs and I am
stronger because of that. Your prayers worked. Dad, I will never forget that you shared with me
that if given the chance at an education you would have loved to be a lawyer. As the oldest in
your family of nine you are one of the strongest men I know, this is yours too! To my sisters that
supported me, thank you! Friends and extended family that witnessed the stress and glory- thank
you for listening.
Anthony E. Baldwin, my first real boss during my high school internship, more than two
decades ago. I was initially scared of you because of your confidence and your West Point
Military background. You treated me like an adult and allowed me to fly. You expected big
things from me and planted seeds that stayed with me throughout my entire life. You are the
first person in my professional life to teach me about leadership, dressing for the job that I
wanted- not the one that I had, or that time when you told me not to act like an intern because I
RAISING SPECIAL NEEDS 3
would get treated like one, and of course there’s the time you sent me home because my dress
code was not professional. You were the first impact on my professional life. I love you as a
human being and so grateful I can learn from you and more importantly that you are still
teaching me.
Next, is Gary L. Selman, an author and executive leadership coach I was fortunate
enough to meet as a then 19-year old temp working at his firm. Your words of wisdom, spiritual
council, and guidance have remained firm through nearly two decades of friendship and
mentorship. I was watching you and I learned. I love the 2.0 version of Gary it is inspiring.
Thank you kindly for all the support through various stages of my life and for also sharing your
wife, Karen with me when I needed it most.
Wyntress Ware, my employer, CEO & Founder at Ware + Associates. You are a true
visionary and a strong force in the community. I am so grateful you chose me to be part of your
team nearly three years ago as I was about to embark on this journey. You never wavered and
stopped supporting me during school or my mayoral campaign, thank you for paving the way!
Aubrey Hope, my current boss the gentle giant holding it down for me so that I could run
the world one dream at a time. I will never lose sight of the things you did to support me as a
mother, person and student, and during my mayoral campaign. You gave me a lot of HOPE
during my journey and I will always be grateful for your support and friendship.
Following, the courageous staff at Bright Stars, Debbie Solomon, Robin Wilson, Tom
Rachal, and Adriana Campos who allowed me the privilege to take a closer look at the lifesaving
work they are doing to help those who need it the most. To the parents and caregivers who I
interviewed for this study who unselfishly and undeniably strive to give their children the best
experience of living a healthy life. I stand with you not only in admiration but also as an autism
RAISING SPECIAL NEEDS 4
mom who hears you and is fighting with you to create a more inclusive and accepting world for
our children.
Lastly, the countless professors who taught me throughout the course of my higher
educational pursuit that started way, back when as a first generation Latina college bound student
from Pasadena, Texas, embarking on her associates degree at the local community college. My
dissertation committee, Dr. Darline Robles, Dr. Leeanne Dunsmore, and my dissertation chair,
Dr. Cathy Sloane-Krop. Professor Sloane-Krop you jumped right in, as I was about to drown. I
will forever be thankful and humbled by your calm spirit, kind hand, and expertise - you saved
me! And in the words of Robert DeNiro as he was delivering the 2015 commencement address at
NYU’s Tisch School, “Next!”
RAISING SPECIAL NEEDS 5
TABLE OF CONTENTS
Dedication ...................................................................................................................................... 1
Acknowledgements ....................................................................................................................... 2
List of Tables and Figures .............................................................................................................. 7
Abstract ........................................................................................................................................... 8
Chapter One: Introduction .............................................................................................................. 9
Introduction of the Problem of Practice .............................................................................. 9
Organizational Context and Mission .................................................................................. 9
Importance of Addressing the Problem ............................................................................ 11
Purpose of the Project and Questions ............................................................................... 13
Performance Goal ............................................................................................................ 14
Stakeholder Group of Focus ............................................................................................ 14
Chapter Two: Literature Review .................................................................................................. 16
Clark and Estes Gap Analysis Conceptual Framework .................................................... 20
Stakeholder KMO Influences ........................................................................................... 20
Chapter Three: Methodology ........................................................................................................ 25
Data Collection and Instrumentation ................................................................................ 26
Chapter Four: Results and Findings .............................................................................................. 30
Participating Stakeholders ................................................................................................ 31
Knowledge Findings ......................................................................................................... 33
Motiviation Findings ......................................................................................................... 39
Organizational Findings .................................................................................................... 43
Summary ........................................................................................................................... 48
Chapter Five: Recommended Solutions, Implementation, and Evaluation Plan .......................... 51
Recommendations for Practice to Address KMO Influences ........................................... 51
Integrated Implementation and Evaluation Plan ............................................................... 56
Data Analyis & Reporting ................................................................................................ 69
Limitations and Delimitations ........................................................................................... 70
Future Research ................................................................................................................ 71
Conclusion ........................................................................................................................ 72
References .................................................................................................................................... 75
Appendix A: Participating Stakeholders with Sampling Criteria for Interview and Observation
....................................................................................................................................................... 80
Appendix B: Protocols .................................................................................................................. 82
RAISING SPECIAL NEEDS 6
Appendix C: Observation Protocols ............................................................................................. 83
Appendix D: Credibility and Trustworthiness .............................................................................. 85
Appendix E: Validity and Reliability ........................................................................................... 87
Appendix F: Ethics ....................................................................................................................... 88
RAISING SPECIAL NEEDS 7
List of Tables and Figures
Table 1. Assumed Stakeholder Knowledge Needs ....................................................................... 22
Table 2. Assumed Stakeholder Motivation Needs ........................................................................ 23
Table 3. Assumed Stakeholder Organizational Needs .................................................................. 24
Figure 1. KMO Relationship Figure ............................................................................................. 26
Table 4. Stakeholder Participants ................................................................................................. 32
Table 5. Assumed Caregiver Knowledge Needs & Valdation ..................................................... 33
Table 6. Assumed Caregiver Motivation Needs & Validadation ................................................. 40
Table 7. Assumed Organization Needs & Validation ................................................................... 44
Table 8. Validadated Influences on Performance ......................................................................... 50
Table 9. Knowledge Recommendations ....................................................................................... 52
Table 10. Summary of Organization Influences & Recommendations ........................................ 53
Table 11. Components to Measure Reactions to the Proposed Changes ...................................... 58
Table 12. Evaluation of the Components of Leardning for the Program ...................................... 63
Table 13. Critical Behaviors Metrics, Methods, & Timing for Evaluation .................................. 65
Table 14. Required Drivers to Support Critical Behaviors ........................................................... 66
Table 15. Outcomes Metrics & Methods for External & Internal Outcomes ............................... 68
RAISING SPECIAL NEEDS 8
Abstract
Respite Care is a relatively new mainstream level support that has been brought to light
by the growing need to support special needs (SN) families of medically fragile children. While
traditionally respite care was once commonly known for the elderly population, it is now more
popular among the SN community. The purpose of this study was to use a modified gap analysis
framework (Clark & Estes, 2008) to evaluate knowledge, motivation, and organizational (KMO)
influences related to respite care support within a non-profit organization that supports the SN
community. Following a review of the literature, assumed KMO influences on performance
were examined through a qualitative, emergent design. Assumed influences were validated or
invalidated through analysis of interview data. A comprehensive implementation and evaluation
plan following the New World Kirkpatrick Model (Kirkpatrick & Kirkpatrick, 2016) is presented
to move the recommended solutions into action and to measure their effectiveness. The
recommendations offered in Chapter Five are intended to increase stakeholder’s knowledge and
motivation and reduce gaps in organizational influences to achieve the organization’s goals.
RAISING SPECIAL NEEDS 9
CHAPTER ONE: INTRODUCTION
Introduction to Problem of Practice
Autism spectrum disorder (ASD) represents a pubic health crisis in the United States with
more children projected to be diagnosed with autism in 2018 than with AIDS, diabetes, and
cancer combined according to the Centers for Disease Control (CDC). Early intervention and
support programs are critical in assisting families’ care for their children with autism, as they try
to navigate daily social interactions and incorporate inclusive opportunities for their children.
Despite the increasing number of autism cases and other developmental and or physical
exceptionalities, there are not an equally growing number of programs to support these families.
In particular, there is a lack of respite care programs that provide families of special needs (SN)
children medical care in a safe environment with an opportunity to take a physical and emotional
break from the added pressures of caring for a SN child. The purpose of this study was to
evaluate how the caregivers (families) perceive the respite care services provided by Bright Stars
and areas for expansion and improvement of services to best serve the community of caregivers
of children with autism and other SN.
Organizational Context and Mission
Bright Stars, a Texas 501(c)(3) corporation, is dedicated to providing free, quality respite
care to families with children with special needs, across the spectrum, in the Dallas Metropolitan
area. Due to the growing number of special needs families across the country and specifically
Dallas and surrounding cities, Bright Stars is playing a unique role in the community by filling a
much-needed service.
RAISING SPECIAL NEEDS 10
Bright Stars coupled with volunteers strive to lend support and relief to special needs
families through its respite care program called Night Lights. Since its inception as a non-profit
organization in 2010, the Bright Stars Program has prided itself on providing loving care to the
families they serve and had been doing so under a church ministry prior. Together with their
dedicated, compassionate volunteers, Bright Stars creates a unique evening for children with
special needs and their siblings on the first, second and third Fridays of every month (excluding
January and July) from 6:00 p.m. to 10:00 p.m. on the campus of Lovers Lane United Methodist
Church; on the campus of White Rock United Methodist on the first Friday of each month; and
on the campus of Christ Foundry United Methodist Mission on the third Friday of each month
for Spanish-speaking families. Night Lights gives the parents the opportunity to have four free
hours, and the children to get four hours of socialization and interaction with their volunteers and
peers, through structured, fun, and educational activities. Numerous activities are offered over
the course of the evening: a large gym to run and basketball to play; computer lab with
educational software; a special craft in the arts and crafts room; areas for blowing bubbles,
reading books and enjoying music; movie viewing; a recreation room with an Xbox; a different
live entertainment each month (petting zoo, face painter, juggler, etc.); and two playgrounds and
visits from Therapy Dogs Incorporated therapy dogs. Two nurses and an off-duty police officer
are hired for each event to keep the children and volunteers safe. The parents arrive for pick up
by 10:00 p.m., energized, to happy kids.
To this end, their services have expanded to support the siblings of their special needs
clients. Six percent of the children they serve are six months to two years, eight percent are three
to four years, 63 percent are between the ages of five to twelve, 19 percent are 13 to 18, and, four
percent are 19 to 21 years. Sixty-nine percent of the Bright Stars participants are males and
RAISING SPECIAL NEEDS 11
thirty-one percent are females. Sixty-six percent of the client base is Caucasian, twenty-three
percent Hispanic, African-American nine percent, and Asian two percent. Prior to 2010, only
one night of respite care was available for 50 children. In 2010, a second night of respite care
was added for an additional 50 children. In 2012, the third night of respite was established,
serving 50 children. As of the date of this study there are a total of 196 children being serviced
by Bright Stars Respite Program. It is important to note that Bright Stars serves all types of
special needs but the majority of the children they serve are on the autism spectrum. They strive
to serve all children without turning anyone away.
Importance of Addressing the Problem
Autism spectrum disorder (ASD) represents a pubic health crisis in the United States, as
more children will be diagnosed with autism this year than with AIDS, diabetes, and cancer
combined according to the Centers for Disease Control (CDC). Early intervention and support
programs are critical in assisting families’ care for their children with autism, as they try to
navigate daily social interactions and incorporate inclusive opportunities for their children (Allik,
H., 2006). Despite the increasing number of autism cases and other developmental and or
physical exceptionalities, there are not an equal growing number of programs to support these
families, and in particular, a lack of respite care (Allik, H., 2006). Respite care is important to
these families because it allows them an immense need to feel a sense of inclusion. Raising
children in the 21
st
century presents itself with its own unique set of challenges including
technology overload, parental roles, and family dynamics. Compile the every day stress of
raising children with a special needs diagnosis, and the stress level of parents and complexity of
other issues arise quickly and often daily. This raises the need to evaluate the critical needs of
families raising children with autism and other SN to feel supported. Respite care by supporting
RAISING SPECIAL NEEDS 12
the caregivers also seeks to support the family unit (McNally et al., 2000) and improve the
quality of life of those involved. One measure of society’s goodness is how well it cares for its
children. Programs such as respite care are critical to the care special needs children receive,
while also providing much needed care to the children’s parents, caregivers, and siblings. There
is still little available data on health-related quality of life (HRQL) in parents of children with
autism and other medical diagnoses (Allik, H., 2006). There is some evidence that strategies
aimed at reducing parent stress may be beneficial to children and their parents (Allik, H., 2006).
Respite care, a temporary break provided to caregivers, is one class of interventions, which may
help reduce parental and caregiver stress. Prioritizing families with children with mental and/or
developmental problems for respite care may be appropriate given their typical higher stress
levels and greater needs. However, the evidence-base for the effectiveness of different types of
respite care is thin, impeding efforts aimed at evidence-informed service improvements
(McLennan, Doig, Rasmussen, Hutcheon, & Urichuk, (2012).
Children with autism are significantly less likely to attend religious services, more
likely to miss school, and less likely to participate in organized social activities (Allik, H.,
2006). Parental concerns over learning difficulty, being bullied, stress coping, and
achievement are overwhelming in the autism group (Lee, et al., 2008).
Despite speculation of about an 80% divorce rate among parents of children with ASD, very
little empirical and no epidemiological research has addressed the issue of separation and
divorce among this population (Freedman, B.H., Kalb, L.G., Zablotsky, B. et al., 2012). The
importance of routine and normalcy is a part of the dynamics of raising autism (Allik, H.,
2006). While it takes a village to raise a child, this is especially true when it comes to
parenting children with autism and other special needs. The relationship between a husband
RAISING SPECIAL NEEDS 13
and wife and other family members is an integral part of the overall well-being of the autistic
child and the rest of the family.
Purpose of the Project and Questions
The purpose of this study is to conduct an evaluation analysis to understand the
knowledge, motivation, and organizational influences that contribute to the overall operation of
Bright Stars proving respite care to the families they serve. Currently there is little to no respite
support services for families with children with autism and other SN in major cities throughout
the United States, and, in particular the Dallas-Fort Worth area. Consequently, this study will
look at respite care in one particular setting and seek to analyze what role caretaker and staff’s
knowledge, motivation, and organizational supports can play in improving Bright Stars’ Night
Lights program model in ways that can help the organization achieve its goals. Evaluating the
organization’s performance will allow the organization to have tangible data that will help them
understand their strengths and weaknesses and create sustainable action items that can facilitate
change and necessary program improvement to best provide respite services to families with
children with autism and other special needs.
The gap analysis framework developed by Clark and Estes (2008) will be used to conduct
this evaluation study. The framework examines knowledge, motivation, and organizational
(KMO) influences affecting an organization’s ability to meet its intended goal and any potential
gaps that might exist between the actual performance and desired performance, in this case gaps
in the organization’s goals related to serving special needs families.
The study concentrates on the knowledge, motivation and organizational constructs that
strongly influence the overall performance of the organization to achieve its mission. The study
also focuses on culture, values, and beliefs that impact motivational influences, as related
RAISING SPECIAL NEEDS 14
directly to achieving the goals of Bright Stars. The research questions this study seeks to answer
are:
1. What are the knowledge, motivation, and organizational influences affecting
the organizations’ ability to meet the needs of families with children with
autism and other special needs through their respite care programs?
2. What are the recommended solutions that will assist Bright Stars in effectively
providing respite services to families with children with autism and other
special needs?
Performance Goal
Bright Stars’ performance goal is to meet 100% of the needs of the families served by
their respite care. By September 2018, this study will help Bright Stars further establish best
effective practices that help bridge them to the special needs community they serve. This study
will seek to understand how they are currently attending to the needs of the families served by
their respite care programs and solutions to further meet those needs.
Stakeholder Group of Focus
While the joint efforts of all stakeholders will contribute to the achievement of the overall
organizational goal of providing 100% of quality and loving care to all of the families they serve,
it is important to evaluate how The Bright Stars caregiver families and or clients feel with regard
to their performance goal. Therefore, the stakeholders of focus for this study will be caregivers
(families) who participate in respite care programs of Bright Stars. The stakeholders’ goal,
supported by the Executive Director, is that 100% of families they served feel supported by the
respite care they receive. A loving and quality care service includes providing respite services,
resources, and support in ways that reflect the needs and life experiences of the clients that seek
RAISING SPECIAL NEEDS 15
respite care. Failure to accomplish this goal will lead to clients feeling unsupported and unsure
of how to navigate the challenges of raising their child with special needs. This inability affects
the organization’s overall goal of providing quality respite services to its community.
This study is organized into five chapters. This first chapter examined t he background of
the problem; the organization of focus, key stakeholders, and the stakeholder and organizational
performance goals related to providing quality respite care services to SN families served. The
next chapter will discuss the literature on this problem of practice and outline the assumed
knowledge, motivation, and organizational influences on performance. Chapter 3 will present the
methodology used to conduct this evaluation of respite care services offered by Bright Stars.
Chapter 4 will analyze the data and present findings. Then, Chapter 5 will provide
recommended solutions for the organization to meet the continuing needs of its SN community
as well as an implementation plan for the proposed solutions and an evaluation plan to measure
their progress.
RAISING SPECIAL NEEDS 16
CHAPTER TWO: LITERATURE REVIEW
Introduction
This section provides a review of literature on the growing need for respite care for
caregivers of children with special needs (SN). This literature review will examine the social
and emotional challenges facing caregivers, societal response to SN, and respite care and its
importance. After a review of the general literature on this problem of practice, this section
provides an overview of the Clark and Estes framework used to examine the needs facing
caregivers of children with SN. In particular, this section will examine the potential knowledge,
motivation, and organizational influences affecting families within the Bright Stars Respite Care
Program who receive the services provided to the SN families they serve. The purpose of the
study is to evaluate how the caregivers perceive the respite care services provided by the
program and areas for possible expansion and improvement to better serve their needs.
Review of the Literature
Social and Emotional Challenges
The rate of autism diagnoses is one that continues to rise according to the Centers for
Disease Control (CDC), at what many call an alarming rate (Allik, 2006). Today, the CDC
estimates that one in every 150 8-year-olds in the U.S. has an autism spectrum disorder or ASD.
With this, there is a related growth in SN families who need social and emotional support and
this appears to be the case regardless of which cultural group the children come from (Blacher &
McIntyre, 2006). Parenting a child with ASD presents parents with a very unique set of
stressors. Research suggests that strategies aimed at reducing parental and or caregiver stress
may be beneficial to children and their parents (McLennan, et.al, 2012). Parenting stress can
have many detrimental effects for parents and families of children with ASD as a whole. This
RAISING SPECIAL NEEDS 17
stress has been associated with caregiver burnout and an increased number of somatic symptoms
(Schieve et al., 2007). There is currently only a small body of research available to educate the
public about the effects on parents of having a child with SN. Among the research that does
exist, it is often diagnosis-specific. For example, Johnston and Mash (2001) concluded that the
presence of a child with ADHD results in increased problems with family and marital
functioning, disrupted parent-child relationships, reduced parenting efficacy, and increased levels
of parental stress. In 2010, The Journal of Autism Developmental Disorders published a study
conducted at the University of Wisconsin-Madison that examined the stress levels of mothers
who have children on the autism spectrum (Seltzer, et. al, 2010). The research concludes that
mothers of autistic children have similar experiences as combat soldiers. Furthermore, these
mothers reportedly spent at least two hours more each day caring for their autistic children than
mothers whose children were not autistic. In addition, autism parents were three times as likely
to report a stressful event on any given day and twice as likely to be tired. These findings
suggest the underlying need for more support at home and at work for parents or other caregivers
of SN children.
Societal Response to Special Needs
There is a need for parents to feel supported and for their children to have socially
acceptable options for their daily and extracurricular activities as especially evident with mothers
under greater stress being more prone to pursue social support (Boyd, 2002). Boyd (2002)
further suggests for mothers of children with autism, informal support appeared to be a more
effective stress-buffer than formal support. The cumulative results of several studies (Allik,
2006) illustrated that parents who received support related better emotionally to their children.
Furthermore, low levels of social support were the most significant predictors of depression and
RAISING SPECIAL NEEDS 18
anxiety in mothers. There is a current wave of corporate and social responsibility seen in some
organizations to support SN parents. For instance, the corporate retail giant Target recently
introduced a shopping cart specifically designed to accommodate SN parents (Lorenzetti, 2016).
As another example, several major airlines now offer flight simulations or rehearsal flights for
SN children and their parents to prepare for upcoming flights (Schectman, 2014). While these
programs are a start and provide a much-needed resource for the families and caregivers of SN
children, these are limited efforts of help in responding to the needs of this growing population.
For instance, the social consequences of raising children who are medically fragile and
developmentally delayed (MF/DD) were explored in an ethnographic study (Rehm and Bradley,
2005) of 20 families with school-age children. The overarching theme was the families’ search
for safety and comfort in social situations. Major categories comprising this theme included the
need to anticipate and plan for the child’s care; overcoming environmental, child-related, and
attitudinal barriers; and finding social activities that were comfortable for all members of the
family. When this search was successful, families could relax, and all members could participate
in a variety of social encounters and activities; but when safety and comfort could not be
achieved, families were likely to limit social activities or split the family to accommodate the
particular situation.
Culture matters. There is a difference in how Hispanic or Latino SN families seek
support (Blacher, et. al, 1997). Attention to culture is long over due, especially given the service
needs of this rapidly growing population (Blacher, et. al, 1997). Parents regardless of their
child’s SN experience face challenges in learning about and gaining access to resources and
services. Those challenges compiled with a language or a cultural barrier can further perpetuate
frustrations (Blacher, et. al, 1997). According to Bailey et. al (1999), all SN parents share a
RAISING SPECIAL NEEDS 19
common set of tasks: (a) learning about their child’s disability, (b) becoming aware of their
child’s educational and therapeutic needs, (c) identifying the range of services that could
potentially support them and their child(ren), and (d) gaining access to those services. Further
research in his study found that out of the 200 Latino parents interviewed of SN children, there
was a high degree of awareness but little satisfaction of services found.
Respite Care and Its Importance
Respite care, a temporary break provided to caregivers, is one type of an intervention that
may help reduce parental stress. While all respite care programs are designed differently, the
basis is the same, to provide a temporary relief for the SN family. While the respite care is a
great break for the caregiver, it also offers as benefits to the SN child and their siblings. Respite
care can offer parents a much-needed opportunity to reconnect through adult interaction and give
SN children an opportunity to interact and socialize with their peers in a fun, safe environment.
Unless a parent and or caregiver is familiar with the word respite, it may be misunderstood or
seen as an underground community that has yet to make its way to being as mainstream as the
diagnosis itself. Hence, there is a real need for parents/caregivers to have an understanding of
what respite care is and to have access to respite care services in their community (Harper &
Taylor-Dyches (2013). In a Google search for the term respite care narrowed down to a specific
community, one can see there are programs answering the growing needs to support families.
With various specifications based on geographical location, age of SN child, etc., there are
options if, the SN parent knows that respite care is even an option for them. Respite care is not
something parents hear about in a care packet of sorts; it is rather something they stumble upon
(Harper & Taylor-Dyches, 2013). Researchers Harper and Taylor-Dyches (2013) found that
autism parents are at risk of having higher stress and lower marital quality than other parents,
RAISING SPECIAL NEEDS 20
and respite care was positively related to improved marital quality and reduced stress.
Furthermore, the number of hours of respite care was positively related to improved marital
quality for both husbands and wives, such that a one hour increase in weekly respite care was
associated with a one-half standard deviation increase in marital quality (Harper and Taylor-
Dyches, 2013). More respite care was associated with increased uplifts and reduced stress;
increased uplifts were associated with improved marital quality; and more stress was
associated with reduced marital quality.
Gap Analysis Framework
Clark and Estes (2008) suggest the relationship between key stakeholders’ knowledge,
skills, and motivation to organizational effectiveness. Hence stakeholders must be able to
evaluate both their strengths and their weaknesses and understand the role both play in
organizational performance. This can be achieved through gap analysis, an approach of
comparing the performance goals set with current levels of achievement and assessing the
knowledge, motivation and organizational gaps between current performance and stated
performance goals (Clark & Estes, 2008). The findings of a gap analysis are critical to
improving performance and organizational effectiveness, ultimately closing the gap (Clark &
Estes, 2008).
Stakeholder Knowledge, Motivation and Organizational Influences
Knowledge Influences
According to research, knowledge must be taught (Mayer, 2011). Clark and Estes (2008)
suggest that knowledge and skills need to be examined in relation to gaps in organizational
performance. Research introduced by Benjamin S. Bloom in 1956, the Taxonomy of educational
objectives: The classification of educational goals was intended to produce a common language
RAISING SPECIAL NEEDS 21
about learning that would allow educators to measure the academic success of their students.
Through the years, the Taxonomy has been revised including Krawthwol’s (2002) version which
includes Bloom’s original knowledge dimensions: factual knowledge, conceptual knowledge,
and procedural knowledge, and adds his own, metacognitive knowledge. According to this
model, the factual and conceptual relate to what is known, the procedural to the knowing of how
something is done, and the metacognitive relates to self-knowledge of the internal thought
process that takes place within one’s own mind (Krathwohl, 2002). Each of these dimensions of
knowledge can be related to what caregivers know about the respite care services provided by
Bright Stars and their ability to effectively access these services. In terms of factual knowledge,
caregivers need knowledge of the respite care services provided; caregivers need the conceptual
knowledge of how to access the services within the organization. In terms of procedural
knowledge, caregivers need to know how the respite care services provided by Bright Stars may
be beneficial to them and their families, including the provision of culturally competent services.
According to Rueda (2011), metacognitive knowledge is often the hardest to truly assess
because it comes from within. Metacognitive knowledge will allow caregivers to reflect on their
role and evaluate their own social and emotional needs in raising special needs children.
Below, Table 1 summarizes key assumed knowledge influences affecting caregivers’
ability to access the services provided by the organization.
RAISING SPECIAL NEEDS 22
Table 1
Assumed Stakeholder Knowledge Needs
Factual Knowledge Caregivers need to know what services are offered by Bright Stars.
Conceptual Knowledge Caregivers need to know how to access the services offered by Bright
Stars.
Metacognitive Knowledge Caregivers need to know how the organization serves as a community
resource to the SN community.
Procedural Knowledge Caregivers need to know how the respite care services provided by
Bright Stars may be beneficial to them and their families, including
the provision of culturally competent services.
Motivation Influences
Clark and Estes (2008) suggest that human beings are made up of two very distinct yet
cooperating psychological systems – knowledge and motivation. Knowledge tells us how to do
things and is our storehouse for experience, and while motivation gets us going and keeps us
moving (Clark & Estes, 2008). This section focuses on motivation-related influences that are
critical to caregivers seeking the services of Bright Stars.
Self-efficacy. Albert Bandura first coined the term self-efficacy in 1977 to analyze the
role one’s beliefs play in motivation and performance outcomes (Maddux & Gosselin, 2011).
Bandura (2000) states that self-efficiency is important to examine because once a person begins
to doubt their capabilities, their motivation decreases. Consequently, understanding self-efficacy
is necessary to one having a realistic understanding of one’s capabilities. In terms of caregivers’
emotional and social well being and their effective use of services provided by Bright Stars,
caregivers need to feel confident that they have the necessary support systems in place for their
SN children. Caregivers also need to feel that respite care offers their children a space to feel
loved and supported. Caregivers also need to understand the connection between their own
emotional and social well-being and that of their children.
RAISING SPECIAL NEEDS 23
Expectancy Value. In the expectancy value motivation theory (EVT) Eccles, (2006)
examines the connection between the expectations an individual has to succeed and the
importance they place on achieving that success. In the case of the SN families, they need to feel
that they will receive the services they are promised. Most mainstream parents debate how old a
child must be in order to allow them to attend social activities and caregivers of SN children
perhaps have this internal debate in a much larger scale. That is why the expectancy value of the
rewards and benefits of allowing their children to attend respite at Bright Stars is a critical
component.
Below, Table 2 summarizes key motivation assumed influences on caregivers accessing
services at Bright Stars.
Table 2
Assumed Stakeholder Motivation Needs
Self-Efficacy Caregivers need to feel confident that Bright Stars has the necessary
support systems in place to care for their special needs children.
Self-Efficacy Caregivers need to feel respite care offers them and their children a
chance for inclusion and increasing socialization with peers.
Expectancy Value Caregivers need to believe that the effort they put forth for their
children to attend respite will bring desired outcomes.
Organizational Influences
Organizational influences are the internal and external factors that determine an
organization’s success in achieving their overall goals (Clark & Estes, 2008). The gap between
desired and actual performance must be assessed and closed if organizational goals are to be
achieved (Clark & Estes, 2008). According to Clark and Estes (2008), often times when an
organization is failing it can be linked to organizational barriers that exist due to faulty
procedures and policies that exist within the organization.
RAISING SPECIAL NEEDS 24
Organizational culture.
Culture is an abstraction. According to Schein (2010), if we do not understand the forces
that are created in social and organizational situations, we become victim to them. Culture helps
to explain what goes on in groups, occupations, and organizations and by formal definition puts
the emphasis on shared learning experiences that lead to shared assumptions held by the
members of the organization (Schein, 2010). For example, Bright Stars needs to clearly
articulate its mission and goals to the caregivers of SN children in the community and may feel
they are already doing this. To best serve the SN community and meet its goal to meet the needs
of 100% of families served, Bright Stars needs to have available resources, including time,
finances, training, and volunteers. In addition, on an organizational level, families would likely
benefit from a resource book from Bright Stars to help guide them to accessing services for their
children, both at Bright Stars and with community partners.
Below, Table 3 summarizes the assumed organizational influences on performance.
Table 3
Assumed Organization Needs
Cultural Setting Bright Stars needs to have available resources
to provide effective care.
Bright Stars needs to compile information to
caregivers, such as a resource book, to guide
them in accessing services for their children.
Bright Stars need to have a proper training in
place for staff/volunteers in order for
assessment, and measure impact.
Bright Stars needs to collaborate with
community partners to reach more caregivers.
Chapter 3 presents the methodology for assessing these assumed knowledge, motivation,
and organizational influences on performance.
RAISING SPECIAL NEEDS 25
CHAPTER THREE: METHODOLOGY
Conceptual Framework: The Interaction of Caregivers’ Knowledge and Motivation
A conceptual framework guides research and provides the structural support for effective
data collection and analysis (Maxwell, 2013). According to Maxwell (2013), the conceptual
framework is something that is constructed, not found, and for this reason, the system of
concepts, assumptions, expectations beliefs, and theories that support the research is a critical
part of the design (Maxwell, 2013). The conceptual framework guiding the methods for studying
the growing need for respite care to support SN families and the evaluation model into Bright
Stars is derived from the Clark and Estes (2008) gap analytic framework. A qualitative approach
will help further a stronger understanding to the performance gaps that exist in knowledge,
motivation, and organizational influences for achieving successful organizational outcomes for
Bright Stars. This conceptual framework will guide the research into further studying the
knowledge, motivation, and organizational factors that lead to Bright Stars achieving its mission.
Below, Figure 1 outlines the conceptual framework.
Figure 1 illustrates the relationship between knowledge and motivation to achieving the
overall performance goal of effectively serving SN families through respite care services at
Bright Stars.
RAISING SPECIAL NEEDS 26
Figure 1: Gap Analysis Conceptual Framework
Data Collection and Instrumentation
To better understand the role Bright Stars plays in providing 100% respite support to all
SN families served and to evaluate their practices, qualitative data collection used semi-
structured interviews and observations. Interviews were conducted with the caregivers of SN
children who have participated in the Bright Stars respite care program to understand their
knowledge, skills, and motivation in assessing the respite care services and the effectiveness of
those services. The qualitative methods approach further explored the organizational influences
affecting effective provision of respite care services to the community through interviews with
leadership of Bright Stars. Finally, the principal investigator made observations of the respite
Knowledge:
Caregivers need to
understand respite
care and how to
access it
Motivation:
Caregivers must
feel they are
getting a benefit
from respite care
Performance Goal:
Achieving mission of
successfully serving SN
families
Organization:
Attract, engage and retain
volunteers who want to contribute
to providing quality respite care.
RAISING SPECIAL NEEDS 27
care program. Together, the interviews and observations created a stronger understanding of the
respite care support currently provided and offered insights for further provision.
Mirriam and Tisdell (2016), suggest that systematic rigor of qualitative data collection
can further establish correlation between credibility with validity and reliability. Research
questions can help aid in the data collection process. As noted by Maxwell (2013), when
selecting research questions and interview questions for data collection, it is best to use open-
ended questions. Open-ended questions allow for further narrative by the interviewee and
greater understanding to the researcher. The research questions guiding this study focus on the
role knowledge and motivation play in the caregivers’ use of respite care services. The use of
multiple data-collection methods helps strengthen the validity of this qualitative study, while also
decreasing the probability of bias (Glesne, 2006).
While the joint efforts of all stakeholders contribute to the achievement of the overall
organizational goal of providing 100% of quality and loving care to all of the families served, it
is important to evaluate how Bright Stars’ caregiver families who use their respite care program
perceive the services provided. Therefore, the stakeholder of focus for this study was all
caregivers of SN children who participated in the respite care program at Bright Stars.
Interviews
Interviews were conducted in March 2018 with the caregivers in order to understand the
knowledge and motivational influences on their use of respite care services at Bright Stars (See
Appendices A and B for interview strategy and protocol). Qualitative interviews allow
researchers to provide descriptions of phenomena that cannot be learned in any other way
(Weiss, 1994). Since the interviewing process is a partnership (Weiss, 1994), it is important that
the researcher not approach the interview expecting predetermined responses (Patton, 2002).
RAISING SPECIAL NEEDS 28
The interviews were conducted after the observations so that the interviews could include
questions based on initial observations. The interviews allowed the opportunity to find out
information that could not be directly observed--- what the participants feel, think, and intend
(Patton, 2002). Purposeful sampling was used during this data collection process because the
researcher was looking at a specific group (Merriam & Tisdell, 2016). Participants were
recruited through email in March 2018. Bright Stars has 196 children that receive services at this
time and those children from over 100 caregiver families. The email went to all current SN
families who had participated in the respite care program the previous year, which resulted in
over 100 caregiver families receiving the email. The email was sent in English and Spanish in an
effort to recruit multicultural populations. Based on response to the email, 13 caregivers were
included for an approximately one-hour interview. The selection of those 13 caregivers was
based on the criteria outlined in Appendix A. The interviews were conducted in an informal
conversational tone that is conducive to respondents answering in ways that are flexible and
spontaneous (Patton, 2002). The Executive Director and Chairman of the Board of Bright Stars
were also interviewed. The questions for the interviews were open-ended and will be focused
around organizational influences affecting the provision of respite care by Bright Stars. Prior to
each interview, caregivers were told that the interview was voluntary, the information provided
would be kept confidential, and they can choose to not answer any or all questions. The
interviews, once transcribed were stored in a password-protected computer with no identifying
information. All reported information ensured that confidentiality of the participant was
maintained.
The focus was on caregivers since they are the ones that utilize the respite care services
for their loved ones. The interviews used probing open-ended questions to guide the discussion.
RAISING SPECIAL NEEDS 29
Successful interview questions provide an opportunity to build upon the respondent’s answers
and ask more relevant questions that will enrich the data of the study. See Appendix B for
caregiver interview questions.
Observations
Observations were used to ascertain the services provided by Bright Stars (See Appendix
C). Observing the interactions between the caregivers and that of Bright Stars on-site while
programs were underway provided a better understanding of the setting (Maxwell, 2013).
Observations of two Night Lights programs, including a Spanish and an English language
program, were conducted for a total of two separate observations.
Observations also offer a way for the researcher to collect more nuanced data based on
the observation of body language and tone of voice. The data were used as an extension to the
interviews. Maxwell (2013) suggests that observation provides a direct and powerful way to
learn behavior and the context in which it occurs.
A discussion of data credibility and trustworthiness; validity and reliability; and ethics
and limitations and delimitations are provided in Appendices D-F, respectively. The following
chapter discusses key findings based on the data collection outlined in this chapter.
RAISING SPECIAL NEEDS 30
CHAPTER FOUR: RESULTS AND FINDINGS
The purpose of this research study was to identify the knowledge, motivation, and
organizational needs affecting caregivers (families) who participate in respite care programs of
Bright Stars and contribute to the organization accomplishing its organizational performance
goal to provide 100% quality care and support to special needs (SN) families and their children.
This study utilized a modified gap analysis framework following a qualitative design. In
analyzing the data, caregivers’ assumed knowledge, motivation, and organizational needs were
considered validated if the interviews suggested that families have a continuing need in that area
and a solution was warranted to address the need and help the stakeholder group better access
respite care services and help the organization move toward its performance goal. Assumed
needs that were not validated do not necessarily indicate improvement is not warranted; instead
they suggest areas of strength that do not currently need solutions, or at least not to the extent of
the validated needs. This chapter discusses the following elements of the research study:
participating stakeholders and interview results, and findings related to the assumed stakeholder
knowledge, motivation, and organizational needs. This chapter addresses the following questions
guiding this study:
1. What are the knowledge, motivation, and organizational influences affecting the
organizations’ ability to meet the needs of families with children with autism and other
special needs through their respite care programs?
2. What are the recommended solutions that will assist Bright Stars in effectively providing
respite services to families with children with autism and other special needs?
RAISING SPECIAL NEEDS 31
Chapter 5 will then discuss the recommended solutions that will assist Bright Stars in effectively
providing respite services to families living with autism and other special needs.
Participating Stakeholders
To better understand how knowledge, motivation, and organizational influences affect
caregivers’ ability to access respite care support from Bright Stars, a series of interviews with
caregivers who had participated in the respite care programs was conducted. In total, two emails,
one in English and one in Spanish were sent in March 2018 to all caregivers, as identified by
Bright Stars, who had participated in respite care services at Bright Stars in the previous year
asking them to participate in a one-hour interview. The email was sent to more than 100
caregivers and, of those 13, based on the criteria in Appendix A, were interviewed for this
research. The participants had special needs children who ranged from a plethora of medical
diagnoses that included five with autism, five with down syndrome, and three with other
diagnoses (including developmental or cerebral palsy). The caregivers’ children ranged from 3
years to 19 years with 10 years as the mean. The total participants were primarily female with
one male caregiver who was the father of the child and the husband to the female caregiver. For
purposes of identification, he will be included in the same participant number, but will be
identified as a father (caregiver). The participants’ demographic background included one
Asian, four Caucasian, two African-American, three mixed or bi-racial and four Latino. The
marital status of the participants included ten married caregivers and three divorced or single.
Also included and interviewed for this study were two senior level members of the organization,
the chairman and the executive director. The chairman is also a SN parent. Table 4 presents the
medical RX (diagnosis), demographics of caregiver, and length of time attending the respite
program and highlights the fact that most of the participants have been receiving respite care at
RAISING SPECIAL NEEDS 32
Bright Stars for several years with the most time being 16 years. Bright Stars was not always a
non-profit organization, but they did offer respite care support under the umbrella of the church
in which they operate under the same name. The respite care services previously were not on the
scale in which they operate today as a full running organization.
Table 4. Stakeholder Participants
Demographic Information of Participants
ID Medical Rx Demographics Years Attending
1 Autism Asian 1 month
2 Down Syndrome Caucasian 3 years
3 Down Syndrome Mixed 5.5 years
4 Down Syndrome Caucasian 16 years
5 Developmental African American 1.5 years
6 Down Syndrome African American 6 months
7 Autism Caucasian 3 years
8 Frontal Lobe Disorder/Other Mixed 4 years
9 Autism Caucasian 3 years
10 Down Syndrome Mixed 1 year
11 Autism Latino 3 years
12
13
Autism
Cerebral Palsy
Latino
Latino
1-2 years
3 years
RAISING SPECIAL NEEDS 33
Caregiver Knowledge Findings
Interview questions were asked to assess the knowledge influences affecting
stakeholders’ accessing quality respite care programming offered by Bright Stars. The
interviews were designed to collect qualitative data to understand each participant’s own
personal experience and knowledge related to accessing respite care at Bright Stars. The
findings suggest stakeholders comprehend how to access the care, however, they wonder if there
is more they may not know about the program. Stakeholders consistently described the services
provided by Bright Stars but were unsure if the organization did more or had additional resources
to offer that perhaps they did not know about. There was a fear of missing out of more resources
among a few of the participants as was expressed during the interviews. Table 5 provides the
assumed stakeholder knowledge needs to access respite care services, as discussed in Chapter 2,
and which were validated or not validated based on the interview data. Following Table 5, a
discussion of each assumed need and the related interview findings are presented.
Table 5: Assumed Caregiver Knowledge Needs and Validation
Assumed Knowledge Need Validated Not Validated
Caregivers need to know what services are provided by
Bright Stars
X
Caregivers need to know how to access the services
offered by Bright Stars
X
Caregivers need to know how the organization serves
as a community resource to the SN community
X
Caregivers need to know how the respite care services
provided by Bright Stars may be beneficial to them and
their families, including the provision of culturally
competent services
X
Need to know what services provided. Caregivers were asked during the interview to
discuss the respite care services provided by Bright Stars, “Tell me about the respite care
RAISING SPECIAL NEEDS 34
services provided by Bright Stars.” The interview data indicates all the caregiver participants
understand the provided respite care and the purpose of that care. Caregiver 12 stated, “It’s a
respite for the parents so they can have a little time with each other.” Similarly, Caregiver 5
stated, “They give us a break to have some time to feel like a regular human being and it is hard
to care for my children given their needs. It’s a chance for my husband and I to catch a movie
worry free and allows some space to catch our breath and know the kids are going to be ok.”
This assumed need was not validated, as caregivers know the respite care services provided. All
participants knew overall what the mission is of the organization and how respite care fits with
that mission. While this need is not validated, some caregivers and families expressed interest in
knowing more about other services Bright Stars offer as an organization that may help them as a
caregiver of a SN child. For example, Caregiver 1 stated, “Getting information about other
services in the community feels like someone else is looking out for them. It gets challenging
but getting an email from Bright Stars about other events is amazing.”
Caregivers need to know how to access the services provided. Every caregiver had a
unique experience about how they came to access the services provided by the organization.
However, two common themes among the participants on how they found Bright Stars was by
doing a Google search and by word of mouth from other people in the special needs community.
Caregiver 1 provided her succinct experience, “I found Bright Stars by a Google search because I
was struggling with my son, and this was a blessing. I was told there was a wait list but I was
still encouraged by staff.” Caregiver 2 shared, “I learned about Bright Stars through word of
mouth, probably by someone from the down syndrome community.” All of the participants felt
confident in their ability to access the services. Word of mouth has helped Bright Stars because
of its reputation for quality respite care within the SN community as Caregiver 8 stated, “The
RAISING SPECIAL NEEDS 35
care here is like The Ritz Carlton as opposed to a lower chain hotel. I’d hate to think of what
would happen without them, my daughter would not be the flower that has opened up without
them and their staff.” This assumed need was not validated based on the responses of the
participants.
Need to know how the organization serves as a community resource. The
participants expressed their appreciation for the support they were getting from Bright Stars. For
the majority of the participants, Bright Stars was the only method of childcare (respite care) they
had for their children. For most parents, childcare is a struggle, however this has a maximized
sense of concern for SN caregivers. Childcare for children can be expensive for most parents.
However, childcare in conjunction with specialized medical care can be unattainable for many
and, furthermore, scarce. For many caregivers they come to rely on the free respite care support
they receive from Bright Stars. Caregiver 1 said, “I get no help from the state, this is a big help.”
Others such as Caregiver 2 stated, “There’s not much out there, we have done other programs but
Bright Stars is top of line.” For Caregiver 5 she does not have many options besides Bright
Stars, “My own mom is not the best option because she falls into the category of not really
knowing how to feed the kids. We do use her sometimes and one other sitter but that gets
expensive.” For Caregiver 4, “My son does participate in weekend retreats but they are on a first
come first serve basis and fill up fast and cost $300 which is costly and I know that while I can
afford this, it is not a possibility for other families.” All caregivers suggested that they were
grateful for this community resource and as Caregiver 3 said, “For my daughter it is a magical
place on earth, even though she can not verbally say it, the look on her eyes.” The interview
participants also appreciated receiving the emails from Bright Stars about other SN events and
resources in the community. As stated by Caregiver 8, “The emails regarding the events help
RAISING SPECIAL NEEDS 36
keep us informed.” Furthermore, Caregiver 4 stated, “All the emails about different activities in
the community especially their resource fair, it was there I was able to find an attorney to support
my son’s long-term future needs.”
A common theme among the families was because of the help they feel they receive from
Bright Stars they would like to see a program in place that allows the caregivers to give back to
the organization that gives them so much. As Caregiver 12 stated, “Thanks from the heart for
the work you do it is a labor of love. It is helpful to a SN parent. It is a constant care to take
good care of the kids and for a few hours you gift us, means a lot for a married couple. Thanks
to each volunteer.” Furthermore, Caregiver 7 stated, “I would like to see more opportunities for
parents to give back, less of a service we use, but more of a community we belong to.” Several
caregivers suggested that there might be other ways to involve the parents and allow them to give
back and build a more solid community and community resource. For example, Caregiver 12
stated, “I want to give back.” This assumed need was validated, as there may be other ways for
Bright Stars to serve as a community resource for these caregivers. This will be explored further
in terms of recommendations offered in Chapter 5.
Need to know how Bright Stars will be beneficial including culturally competent
services. The data suggest that each caregiver interviewed is grateful that such a service exists.
Caregiver 11 stated this program gives her “tranquility and peace.” She went on to state that her
son loves attending and visiting with other siblings who understand what it is like to have a SN
sibling and, while her daughter used to be afraid of attending unknown places, now she is a little
more social and enjoys being with other kids. Another component to the quality respite care,
caregivers depend on the other benefit of their children socializing with others. For instance,
Caregiver 1 stated, “The environment at Bright Stars cannot be recreated not even in my home. I
RAISING SPECIAL NEEDS 37
myself could not care for my children the same way they do and there’s no comparison in the
quality.” For Caregiver 3, “The kids don’t ever want to leave because they love the intense
attention they get at the program. Both my kids push me away and look for their volunteers. I
love the date time for me and my husband, but mainly it is for the kids no matter what else is
going on.” Further validating this assumed need Caregiver 3 went on to state, “The fact that both
my kids are supported and does not leave one of my kids without and as a family we are not torn
in a million different directions is amazing. Plus this allows me and my husband to go and enjoy
our time alone. This program has improved the quality of our lives and my marriage. We know
that without fail at least once a month we will get our special time and we count on it so much
that my husband I will not ever consider moving to another city.”
The Spanish respite program for Bright Stars in particular, has worked for the Latino
community and provided culturally competent services. Currently the Spanish respite program
serves 28 children, which includes the SN child and their sibling(s). The program is held once a
month in a heavily Latino populated part of the city. There is a major need to bridge the
knowledge gap about resources like Bright Stars in all communities but this is especially true in
underserved communities hence, the importance of the program being located in the heart of the
working class Latino community. For Caregiver 1, Bright Stars is a new and important
opportunity for her child and although they attend the main campus of Bright Stars, it shows the
disparities within cultures because as she states, “My son does not know the issues he faces and I
keep them private out of fear that we will be looked down upon in my cultural community.”
During pre-interviews, the caregivers were asked whether their child knew of his/her medical
diagnosis and the majority stated that their child did not have the complete ability to understand
their diagnosis; whereas, Caregiver 1 made a conscious decision to keep the diagnosis from her
RAISING SPECIAL NEEDS 38
child out of fear of being looked down upon in her community. She further stated, “Mental
illness in my country is taboo and wrong. I even had a friend stop talking to me because of my
child’s condition. Because my son is able to function in most environments and my hope is that
he overcomes his challenges and right now he does not need to know, if he does one day we will
get to that. Right now I want him to be the best that he can.” This is another example how the
need for culturally competent services is highly prevalent. For instance, Caregiver 13 who heard
about the program from her child’s teacher and social worker stated in Spanish, “It is a very
good program. The helpers are very helpful and the church knows my son and they ask about
him when he does not attend. They are good people.” This was apparent during my observation
at the Spanish Respite Program facility in the way the volunteers seemed to embrace these kids
as their own. A majority of the volunteers were Spanish-speaking. One major characteristic
about the Latino culture is family. In particular, during my observation, one mother was rushing
in to drop off her young child who was in her arms. He was about 18 months old and she
appeared happy to transport her son from her arms into the arms of another caretaker (volunteer).
It appeared almost without worry. The mother and the volunteer exchanged in a friendly
dialogue and then the mother left. Soon thereafter the volunteer was singing to the young boy
and making motherly gestures to him, as if he was her own child. As with any caretaker, there is
a need to understand all of a child’s needs, especially that of the SN child, but further building
upon that understanding is the cultural awareness that is present with the Spanish respite
program, which is extremely important in building that trust between caregiver and volunteer.
When medical issues are part of the childcare equation, it brings about another added stressor for
parents. For example, Caregiver 12 stated, “The fact the people speak Spanish is an added
RAISING SPECIAL NEEDS 39
bonus.” While trust is something that transcends across all cultures and barriers, the Spanish-
speaking families appeared to be leaving their children with family.
Many of the participants also felt that Bright Stars was the only other caregiving option
besides them that could provide the quality care their children required. For Caregiver 11, the
nurse being there was something that provided her comfort. The police officer on-site was also
mentioned as making caregivers feel safe. Caregiver 10 explained, “Because there are caring
and well qualified people that I feel comfortable leaving them with and they can have interaction
with someone other than their parents and interact with other kids as well.” For Caregiver 5,
who has no real reliable form of quality care, she relies heavily on the competent services her
daughter receives through the respite program, “I feel safe leaving my kids there, and they have a
nurse that can help with any issues. These are people that actually understand who my kids are,
they know who my kids are and don’t have unrealistic expectations. The only other sitter we
have is very expensive and day care is not an option.” Bright Stars is meeting this assumed need
related to caregivers knowing how the respite care services are beneficial to them and their
families, including providing culturally competent services. Therefore, this need was not
validated.
Caregiver Motivation Findings
The interview findings suggest that caregivers are motivated to seek respite care
programs for their special needs children. While the caregivers’ benefits are great for themselves
personally by offering peace, sanity, and improved quality of marriage in some cases, the respite
care support was more so for their children. Most caregivers agreed they appreciated the
temporary relief or break from a 24/7 role as a SN caregiver but the benefits for their children far
outweighed their own personal benefits. For instance, Caregiver 3 stated, “The kids love it so
RAISING SPECIAL NEEDS 40
much, this is perfect once a month and it is such a huge gift that I cannot imagine asking for
more.” Another example is Caregiver 9 who expressed, “When our son is happy, we are happy
and that means more than the break me and my husband get.” Following Table 6, a discussion of
each assumed motivation need and the related interview findings are presented.
Table 6: Assumed Caregiver Motivation Needs and Validation
Assumed Motivation Need Validated Not Validated
Caregivers need to feel confident that Bright Stars has
the necessary support systems in place to care for their
special needs children
X
Caregivers need to feel respite care offers them and
their children a chance for inclusion and socialization
with peers
X
Caregivers need to believe that the effort they put
forth for their children to attend respite will bring
desired outcomes
X
Need to feel confident they have necessary support in place to care for their child.
The interview data suggests that the participants are satisfied with the support measures
in place at Bright Stars to care for their children. Caregiver 2 stated, “There is plenty of staff,
nursing staff, and security which means any issue can be handled. All of the families I have
recommended have also enjoyed it.” Another Caregiver 6 echoed the same sentiment, “The
staff is excellent, and they have medical personnel in case of an emergency and are very attentive
to the needs of my child specifically to their allergies. They do a good job ensuring everyone
knows about my child’s needs and my mind is at ease knowing that they know my child’s
medical history and they can facilitate in case of a greater emergency.” Caregiver 5 stated,
“Knowing there is a medical professional there takes the worry out of our minds and my
husband, and I can go out and have literally forgotten we had children for a few hours.”
Caregiver 7 expressed that the organization has never said no, despite their child’s physical
RAISING SPECIAL NEEDS 41
needs.” One caregiver even referred to the program as “Disneyland.” For caregivers to be
motivated to use the respite care, and for the organization to meet its goal of being a service to
the community, caregivers need to feel confident the service has the supports in place to serve
their children. This need was not validated based on the data collected, as parents expressed that
those supports are in place.
Need to feel respite offers their child a chance at inclusion and socialization. For
special needs children, there can be few chances for inclusion and socialization. SN caregivers
worry that already in a world that can be difficult to navigate for mainstream children those with
SN are destined to an even more challenging experience with things such as inclusion and
socialization. For instance, research suggests children with autism were significantly less likely
to attend religious services, more likely to miss school, and less likely to participate in
organized social activities (Allik, 2006). Parental concerns over learning difficulty, being
bullied, stress coping, and achievement are overwhelming in the autism group (Lee, et al.,
2008). Therefore, opportunities for inclusion and socialization can be of great value and
motivating to caregivers. All of the participants felt that respite care provided not only an
opportunity of rest for them as a caregiver but also a chance for their children to have quality
interaction with other kids. Hence, Caregiver 7 stated, “My main reason for attending is the
social aspect for my son. He is a very outgoing social guy and so to be able to go to an
environment with peers that are accepting of him and his needs is equally amazing and rare.”
Caregiver 8 stated, “For her to have the interaction with other children similar to her, knowing
that she has fun, without putting on a front, companionship is a positive experience.” Caregiver
9 similarly stated, “My son feels accepted here. It’s very positive and a reassuring relief to know
your child is happy and we as parents can take a deep breath.” The opportunity for inclusion and
RAISING SPECIAL NEEDS 42
socialization the children get from Bright Stars is one that most of the participants put ahead of
their own needs for a break or rest as a caregiver. This was a common theme among the
participants, as Caregiver 3 stated, “We do it for our kids more so than the date night because
they enjoy it so much. Our child gets so excited and can’t focus on anything else.” For
Caregiver 2, she stated, “This program forces my husband and I to go out and enjoy ourselves
and focus on our marriage and have fun as a couple. We know our lives are different than a
typical family and most kids mature differently and ours is going to stay the same and he won’t
ever get to go out on his own.”
Every SN child at Bright Stars is partnered with a buddy (volunteer). Because many of
the volunteers have been volunteering often for more than one year, they try to pair each SN
child or sibling with the same volunteer and one that can focus on their interests. Sometimes,
depending on the needs of the child, more than one buddy is assigned, or if there is more
volunteer support than children, they can do that as well. The children respond well to the
buddies. For example, Caregiver 7 spoke to the immense bond that was formed by her SN child
and his buddy, “They really don’t have much in common but their relationship goes both ways
and having friends at Bright Stars has enriched my son’s life.” This need was not validated as
the respite program motivated caregivers to participate based on the socialization and inclusion
the program offers.
Caregivers need to believe that the effort they put forth to attend respite brings
desired outcomes. To be motivated to attend, caregivers need to believe the effort put forth to
attend, which with a SN child can be substantial, brings desired outcomes. Caregivers
consistently expressed a variety of positive outcomes attending and the motivation to attend.
These positive outcomes included, children becoming less shy, an increase in their ability to take
RAISING SPECIAL NEEDS 43
turns with other children thereby an increase in social skills, growth in their vocabulary,
increased cognitive development, a building of friendships, increased quality of life, better
marital relationships, and, importantly, feeling a sense of belonging. When asked what else if
anything the organization could do to better support the caregivers, most of the participants
simply stated that they wish to have more respite nights, knowing they already were receiving a
great help. A few participants felt that maybe there were more opportunities for the older
children to do more. Caregiver 7 admitted it was hard to come up with anything else, “We were
pumped alone with respite and now they offer prom, icing on the sundae. Maybe just maybe
there is an opportunity for the older kids to go out in the community for the over 16 crowd,
maybe going to the movies.” There was a common bond expressed among the caregivers as if
getting their children to attend the respite care was part of the caregiver and child’s therapy.
Caregiver 8 stated, “It has given my daughter an opportunity to lean on others outside of her
family, to come out of her shell, and me a break from being a 24 hour caregiver. Knowing she
can come here without me having to wait by the phone has been a big help.” This assumed
motivation need was not validated as caregivers clearly have the motivation to attend based on
the positive outcomes of attending.
Organizational Findings
One important component of this research looked at assumed organizational influences
on performance affecting caregivers accessing respite care services and the organization’s ability
to meet its organizational performance goal of filling the community need for respite care
services for families with SN children. This section examines the role, if any, organizational
influences played on how caregivers accessed the respite care for their children. The findings in
this section were informed by both interviews with the caregivers and interviews with two Bright
RAISING SPECIAL NEEDS 44
Stars’ leaders. Following Table 7, of validated assumed organizational needs, a discussion of
each assumed organizational need and the related interview findings are presented.
Table 7: Assumed Organizational Needs and Validation
Assumed Organizational Need Validated Not Validated
Bright Stars needs to have available resources to
provide effective care
X
Bright Stars needs to compile information to
caregivers, such as a resource book, to guide them
in accessing services for their children
X
Bright Stars needs to have proper training in place
for staff/volunteers
X
Bright Stars needs to collaborate with community
partners to reach more caregivers
X
Bright Stars need to have available resources to provide effective care. The chairman
and executive director provided valuable insight into the organizational make-up and mission
that was established for this program. As stated, “This program started about 16 years ago so
that parents could initially attend church. Since then it has evolved into what it is today. The
parents started asking for support, the divorce rate of SN caregivers is like 70%.” The chairman
continued, “The mission is to always provide free respite care and never charge a dime for any of
our services.” In fact, 75% of the families served by Bright Stars are economically
disadvantaged. The chairman is also a SN caregiver to a child that requires 24-hour care and has
been the chairman of Bright Stars since 2009. As with any organization, there is always a need
to be financially stable. From a financial standpoint, as discussed by the chairman, raising
money and attracting donor support and resources is a constant part of operating. To this point,
the organization has met its vision and has served over 200 children. As stated by the chairman,
“Best success is when the kids come to our place they are special, it is not about the money we
raised, as we have a strong donor list.” At the same time, the need to continue to attract funding
RAISING SPECIAL NEEDS 45
in order to see their vision of growing to provide more respite support facilities is being
discussed and is recognized as a continuing need. The chairman stated, “Maybe we can do more
respite nights at another satellite location because there are tons of children who need help.” For
instance Caregiver 10 stated, “Currently the main location is a long drive and they were
supposed to start a location closer to me.” The conversations are taking place, and there is a
need for strategic plans to support the growth plan according to the chairman. Because the
increase of those wanting services is so strong, it is imperative to constantly evaluate the growth
process without compromising the quality of care. The executive director, who has been with
Bright Stars since 2014, went on to say, “Funding is always a big priority, having a vision
without the funds is not optimal. We continue to need volunteers and nurses. We have a small
paid staff, we pay our nurses and rent at the church cannot be paid without our strong volunteer
base because if we did not have them, we would have to pay more staff.” This assumed need is
validated because the organization sees continuing need for services which will require finding
innovative ways to stay funded and to increase financial support in order to provide quality
respite care to their large and growing community.
Bright Stars needs to provide information that is valuable to caregivers. To best
reach the diverse stakeholders participating in Bright Stars programs and services, and to attract
additional community members in recognition of their mission, information will need to be
disseminated in a variety of ways. According to interviewees, traditionally the website has been
the focal point for the dissemination of information to community members. The chairman
recognizes this cannot be the only way. Bright Stars also offers a free annual resource fair that is
one of the biggest events they host. In addition, they send emails and rely on word of mouth in
addition to partnering organizations. The interviewees suggested they could do a better job in
RAISING SPECIAL NEEDS 46
ensuring families get the information they need. The executive director credited word of mouth
as their biggest means of how they reach others stating, “We have been featured in D Magazine,
and other publications and our special needs community is small, but our biggest success comes
from word of mouth.” She went on to state, “When we know about a need we make the
connections, everything we do is about making the connections.” Moreover, Caregiver 11
stated, “Without my friend telling me about the program, who is also a SN mom, I might not
have known about it.” This assumed need is validated because, while traditional means of
dissemination have allowed them to meet current needs, plans for additional growth and reaching
a larger community and fundraising to do so will entail new methods of information
dissemination. There is still a need and opportunity to share information more effectively in the
community.
Bright Stars needs to have proper training in place for staff/volunteers. Specialized
medical, cultural and special needs population training needs to be in place in order to meet the
specific and individual needs of their stakeholders. According to the chairman, “We could
partner up and bring in medical experts to hold seminars for the volunteers and staff because we
take medical care and safety very seriously.” The medical needs of each child are different and
with many medical advancements taking place, there is a strong need to ensure the training is up
to date. Today, prior to each respite event, the volunteers are given the individual profile of their
particular SN child they will be partnered with as a buddy for the evening. Children have a
folder that discusses their specific needs, which is helpful and extremely necessary to review
prior to the start of respite care. There is a volunteer overview that is given prior to the respite
care so that each volunteer can get to review the child’s needs, likes/dislikes and ask medical
questions if necessary to the nurse on duty.
RAISING SPECIAL NEEDS 47
Much like many other organizations there is a need to be financially conscious but that
does not mean there should ever be a compromise in terms of training for staff and volunteers.
As stated by the executive director, “We currently pair our seasoned volunteers with our new
ones. We offer continuing education for our nurses on various topics that are pertinent to the SN
community. We also utilize outside training resources and we potentially will offer more as we
grow but we will always focus on quality of care.” The caretakers who expressed confidence in
the care being taken of their children while in respite care also confirmed these insights. As one
caretaker stated, “The care is awesome. The volunteers assigned to the children are great and my
kids never want to leave. I know the care is secure and is always above and beyond.” This
assumed need was not validated because Bright Stars, according to interview participants, is
already offering appropriate training to their staff/volunteers.
While this assumed organizational need focused on having in place proper training for
Bright Stars staff and volunteers to care for the children participating in respite care, and they
were found to be well trained in this area, it is interesting to note that another type of training not
originally specified as part of this assumed need, has to do with caregiver training and Bright
Stars staff and leadership training to help them do assessment and measure the impact of their
work. This training could be very valuable to Bright Star leadership as they work to expand
respite care services, collaborate with community partners, and attract additional funding, as will
be discussed below as well as in an implementation plan in Chapter 5.
Bright Stars needs to collaborate with community partners to reach more
caregivers. The caregiver interviews suggest a need in the community to support SN families.
While by some accounts the SN community is small, the need is not, as suggested by the benefits
caregivers attribute to accessing respite care services. To reach additional families, collaboration
RAISING SPECIAL NEEDS 48
will be needed. Collaboration will be needed to develop partnerships with community
organizations to meet the caregiver needs, to expand services, and to build financial viability to
do so. Bridging the gap from community to corporations could help further strengthen not only
visibility, but also volunteer collaboration and also financial support. Media outreach is another
avenue that is critical to ensuring their role in the community is not only seen, but also elevated.
According to the executive director, “The collaborations and partnerships do help us reach new
caregivers.” She goes on to state that before she joined the organization four years ago, it was
simply the “word of mouth” system that was in place to promote their annual resource fair. Most
recently, their presence has been elevated by being chosen as an organization worth supporting
by Junior League, an organization whose main mission is to promote volunteerism. The
executive director stated that they are ready to continue to impact more lives and felt that
working with the media to leverage media attention could help them further reach their goals. A
major area of interest according to the executive director is increasing media awareness. This
assumed need was validated because there is a recognized opportunity to continue to build
community partnerships to increase not only the families they serve but also leverage more
financial support and SN awareness on a larger scale.
Summary of Significant Knowledge, Motivation, and Organizational Findings
This research study assumed eleven knowledge, motivation and organizational influences
that may affect the organization’s ability to achieve its goal of providing quality respite care to
the SN community. The findings support that in general, caregivers have the knowledge and
motivation to access respite care services at Bright Stars, and that the respite care programs
provided offered a wide range of benefits to the community. At the same time, some
RAISING SPECIAL NEEDS 49
organizational needs, if addressed, would allow Bright Stars to further expand services, outreach,
and partnerships to meet the growing needs of the community.
In terms of areas where solutions could benefit the provision of services, the findings
indicate that caregivers want to know more about all the offerings and services provided by
Bright Stars as well as related events happening in the community. The findings suggest
caregivers value the respite support program that is currently in place, expressing immense value
and an overwhelming amount of gratitude for the program, its staff, and volunteers. The success
of the program leads to additional needs facing the organization as it recognizes the need to grow
and expand services without jeopardizing their mission to provide quality respite care. Some
recommendations to address these continuing needs are presented in Chapter 5.
RAISING SPECIAL NEEDS 50
CHAPTER FIVE: RECOMMENDED SOLUTIONS, IMPLEMENTATION, AND
EVALUATION PLAN
Chapter 4 presented the results and findings from data collected through interviews and
observations to answer the study’s first research question: What are the knowledge, motivation,
and organizational influences affecting accomplishing the organizational goal to provide quality
respite care to medically fragile children and their families? An assumed influence on
performance was determined validated if the data confirmed that additional effort or attention
was needed in that area to achieve the organizational performance goal, and close any gaps
between current performance and desired performance. In Chapter 4, four assumed influences
on performance were validated, including one knowledge influence and three organizational
influences, as shown in Table 8. For those validated influences on performance, the study’s
second research question asks: What are the recommended solutions that will assist the
organization in effectively providing respite services to families with children with autism and
other special needs? The second research question is addressed in this Chapter.
Table 8: Validated Influences on Performance
Validated Influences on
Performance
Knowledge Influence Caregivers need to know how the organization serves as a
community resource to the SN community
Organizational Influence Bright Stars needs to have available resources to provide
effective care
Organizational Influence Bright Stars needs to compile information to caregivers, such
as a resource book, to guide them in accessing services for
their children
Organizational Influence Bright Stars needs to collaborate with community partners to
reach more caregivers
RAISING SPECIAL NEEDS 51
This chapter identifies recommendations for practice, related to current validated
knowledge and organizational gaps to improve the organization’s ability to provide quality
respite care to the SN community. Following the presentation of recommended solutions this
chapter presents an implementation plan and then an evaluation plan using the New World
Kirkpatrick Model Framework (Kirkpatrick & Kirkpatrick, 2016). The recommendations,
implementation, and evaluation plans are interlinked and designed to work holistically to reduce
or eliminate knowledge, motivation, and organizational influences gaps. Finally, this chapter
discusses the limitations of the study and recommendations for future research.
Recommendations for Practice
Knowledge Recommendations
According to research, knowledge must be taught (Mayer, 2011). Clark and Estes (2008)
suggest that knowledge and skills need to be examined in relation to gaps in organizational
performance. Bloom (1956) introduced a common language for learning that was intended to
allow educators to measure the academic success of their students. Through the years, the
research has been revised including Krawthwol’s (2002) version which includes Bloom’s
original knowledge dimensions: factual knowledge, conceptual knowledge, and procedural
knowledge, and adds his own, metacognitive knowledge. According to Bloom’s model, the
factual and conceptual relate to what is known, the procedural to the knowing of how something
is done, and the metacognitive relates to self-knowledge of the internal thought process that takes
place within one’s own mind (Krathwohl, 2002). Each of these dimensions of knowledge can be
related to what caregivers know about the respite care services provided by Bright Stars and their
ability to effectively access these services. The findings from Chapter 4 suggest that caregivers
have needed factual, conceptual, and procedural knowledge, but have continuing needs related to
RAISING SPECIAL NEEDS 52
metacognitive knowledge of how the organization serves as a community resource to the SN
community.
According to Rueda (2011), metacognitive knowledge is often the hardest to truly assess
because it comes from within. Metacognitive knowledge will allow caregivers to reflect on their
role and evaluate their own social and emotional needs in raising special needs children. The use
of metacognitive strategies facilitates learning (Baker, 2006). Below, Table 9 summarizes this
key knowledge influence affecting caregivers’ ability to access the services provided by the
organization and a recommendation solution.
Table 9. Knowledge Recommendations
Validated Knowledge Needs and Recommendations
Assumed Knowledge
Need
Validated?
Principle and Citation Context-Specific
Recommendation
Caregivers need to
know how the
organization serves
as a community
resource to the SN
community.
Yes Information learned
meaningfully and connected
with prior knowledge is stored
more quickly and remembered
more accurately because it is
elaborated with prior learning
(Schraw & McCrudden,
2006).
Bright Stars will host
community outreach
events to continue to
educate not only the
caregivers they serve
but also the
community in which
they are located.
Proposed knowledge solutions. In order for caregivers and respite support providers to
bridge the knowledge gaps between said roles, caregivers need to know they are supported by a
community ready to serve them. Respite care by supporting the caregivers also seeks to support
the family unit (McNally et al., 2000) and improve the quality of life of those involved.
Furthermore, it will be important to connect learning to individual interests to encourage
meaningfulness (Schraw & McCrudden, 2006).
The use of metacognitive strategies facilitates learning (Baker, 2006), which will be
promising to the transfer of knowledge. As most of the Bright Stars’ staff is volunteers that vary
RAISING SPECIAL NEEDS 53
month to month, such on-going training can mitigate the efforts of achieving the goal of
providing a much-needed resource to such a marginalized community. Research has shown that
reinforcing metacognitive skills is an effectual method in perpetuating educational opportunities
to achieve desired knowledge (Baker, 2006).
Organization Recommendations
The goal of the recommendations listed in Table 10 is to close the cultural setting gaps in
the organization. The table lists the assumed organizational influences previously identified
through the literature review and validated through data collection. The table identifies the
organizational influence, principle related to the assumed influence and the proposed
recommendation to close the gap.
Table 10
Summary of Organization Influences and Recommendations
Assumed Motivation Influence
Validated
Principle and Citation Context-Specific
Recommendation
Cultural Model: The
organization needs to
collaborate with community
partners to reach more
caregivers.
Yes Effective organizations
insure that
organizational
messages, rewards,
policies and procedures
that govern the work of
the organization are
aligned with or are
supportive of
organizational goals and
values (Clark and Estes,
2008).
Bright Stars should identify,
reach out to, and potentially
help train additional
community partners who
have a similar mission and
values to help provide
respite care and other
services to SN families.
RAISING SPECIAL NEEDS 54
Cultural Setting: The
organization needs to have
available resources to provide
effective care.
Yes Effective change efforts
ensure that everyone has
the resources
(equipment, personnel,
time, etc.) needed to do
their job, and that if
there are resource
shortages, then
resources are aligned
with organizational
priorities (Clark and
Estes, 2008).
By further establishing
Bright Stars as a community
resource with greater public
awareness, the impact
should be used to garner
stronger community and
corporate ties that could
financially and
operationally support Bright
Stars as it continues to
grow.
Cultural Setting: The
organization needs to compile
information to caregivers,
such as a resource book, to
guide them in accessing
services for their children.
Yes Effective change efforts
ensure that everyone has
the resources
(equipment, personnel,
time, etc.) needed to do
their job, and that if
there are resource
shortages, then
resources are aligned
with organizational
priorities (Clark and
Estes, 2008).
The organization, with input
and assistance from
caregivers and other
stakeholders, needs to
produce an annual resource
book in multiple languages
to guide caregivers in
accessing services for their
children.
Cultural model proposed solution. The organization will need to be visible within the
community so that caregivers are knowledgeable about the services they provide within the SN
community. Clark and Estes (2008) suggest that effective organizations insure that
organizational messages, rewards, policies and procedures that govern the work of the
organization are aligned with or are supportive of organizational goals and values, thus making
them more visible to the greater community. Therefore, it is recommended that the organization
should collaborate with community partners in an effort to reach more caregivers.
Currently there is little to no respite support services for families with children with
autism and other illnesses in major cities throughout the United States, and, in particular the
RAISING SPECIAL NEEDS 55
Dallas-Fort Worth area. Hence, the need for partnerships will help expand a much-needed
benefit to SN families. With this, there is a related growth in SN families who need social and
emotional support and this appears to be the case regardless of which cultural group the children
come from (Blacher & McIntyre, 2006). This indicates that parenting a child with ASD and
other SN presents parents with a very unique set of stressors. Having more community partners
and programs to access will help meet the needs of this large and growing community.
Cultural settings proposed solutions: Two cultural settings needs call for
recommendations around additional resources. First, the organization needs to solicit additional
resources to meet its mission of caring for special needs families in the community. The demand
for services is growing, and there is a shortage of respite care services, with the bulk of those
services being offered by Bright Stars. Effective change efforts ensure that everyone has the
resources (equipment, personnel, time, etc.) needed to do their job, and that if there are resource
shortages, then resources are aligned with organizational priorities (Clark and Estes, 2008). To
expand services, Bright Stars will need to obtain additional resources, including financial
commitments and facilities. To do so, Bright Stars will need to engage in outreach, awareness,
and fundraising campaigns. This recommendation ties in closely with the cultural model
recommendation about enhancing collaboration with community partners.
Further, this research suggests that caregivers need more resources in order to effectively
access respite care. Appropriate resources need to be provided by the organization to support
stakeholders. This could include a resource manual provided in the appropriate language of the
caregiver on how to access respite care services. Parents, regardless of their child’s SN,
experience challenges in learning about and gaining access to resources and services. Those
challenges compiled with a language or a cultural barrier can further perpetuate frustrations
RAISING SPECIAL NEEDS 56
(Blacher, et. al, 1997). According to Bailey et al. (1999), all SN parents share a common set of
tasks: (a) learning about their child’s disability, (b) becoming aware of their child’s educational
and therapeutic needs, (c) identifying the range of services that could potentially support them
and their child(ren), and (d) gaining access to those services. A resource manual could help
parents have a guide to the range of services available and accessing those services.
Integrated Implementation and Evaluation Plan
Implementation and Evaluation Framework
The model that informed this implementation and evaluation plan is the New World
Kirkpatrick Model (Kirkpatrick & Kirkpatrick, 2016), based on the original Kirkpatrick Four
Level Model of Evaluation (Kirkpatrick & Kirkpatrick, 2006). The New World Kirkpatrick
Model consists of four levels of training and evaluation: (1) Reaction; (2) Learning; (3)
Behavior; and (4) Results (Kirkpatrick & Kirkpatrick, 2016). Kirkpatrick (2016), states that
Level 4 defines results of a program as the degree to which targeted outcomes occur as a result of
the training and the support and accountability package. Furthermore, Level 4 is also stated as
having the distinction of being the most misunderstood of the four levels (Kirkpatrick, 2016).
Utilizing the New World Kirkpatrick Model as a framework for the implementation and
evaluation plan will further support the organization to measure the success of their desired
outcomes while providing a plethora of opportunities for perpetual advancements during the
execution phase of the implementation and evaluation plan.
The purpose of Bright Stars is to improve the quality of life to special needs families by
providing respite care support. This project examined the knowledge and skills, motivational,
and organizational influences that affect the organization in meeting the needs of the caregivers
that access respite care support. The proposed solutions: community collaborations, related on-
RAISING SPECIAL NEEDS 57
the-job supports, and a respite care support access guide in multiple languages, should move
Bright Stars to produce the desired outcome – an efficacious caregiver accessing respite care
support and a decrease in families that do not access respite care caused by knowledge and
organizational gaps.
Organizational Purpose, Needs and Expectations
The purpose of this study was to evaluate knowledge, motivation, and organizational
influences affecting the organization’s ability to provide quality respite care support for SN
families by perfecting effectiveness in achieving its mission. Through a review of the literature
coupled with interviews and observations with caregivers who directly benefit from the
organization, four influences were determined as areas for improvement. The identified
influences include: caregivers’ knowledge of how the organization serves as a community
resource; organization’s role in being a visible community partner and engaging in outreach
opportunities to further promote the organization and the work it does; organizational resources
to provide effective care; and caregiver resources to help them access services. For the proposed
solutions to close current gaps, an effective implementation and execution plan for the
organization is required. The desired outcome of these proposed solutions is to increase the
quality and care of the SN children and families that attend Bright Stars’ respite program now
and in the future.
Level 1: Reaction
Kirkpatrick and Kirkpatrick (2016) suggest that in the process of change, the first step is
to examine stakeholder reaction to the changes, to help understand how they are received and to
make any needed adjustments to the proposed course of action. For example, it is important to
evaluate and measure the reactions of participants engaged in training or performance
RAISING SPECIAL NEEDS 58
improvement programs because the results can authenticate the level of quality of the
intervention. According to Kirkpatrick and Kirkpatrick (2016) evaluating reactions can quickly
and efficiently gather information regarding the quality of the program and the degree to which
participants were engaged, found it relevant to their specific jobs, and were satisfied with the
level of training. Table 11 identifies the methods that could be used to measure the reactions of
Bright Stars staff (volunteers) and caregivers to the performance improvement program and
their level of engagement. The level of engagement of both the Bright Stars staff (volunteers)
and the caregivers is going to be a critical element to quantify the engagement of both groups. In
order to continue to attract, retain, and engage staff (volunteers) and caregivers there need to be
ongoing methods to ensure both groups are working simultaneously towards the common goals
of the program.
Table 11
Components to Measure Reactions to the Proposed Changes
Method(s) or Tool(s) Timing
Engagement
Completion of training/empowerment by Bright Stars staff/leadership. Ongoing
Attendance of volunteer meetings by volunteers and the number of
volunteers registered will be used and tracked as data to gauge impact of
volunteerism.
Monthly
Relevance
Leadership feedback to Bright Stars staff will help make real time
changes as needed.
After training event
Post training survey administered by staff to volunteers to assess if
training is seen as a valuable tool to help them better support.
After training event
RAISING SPECIAL NEEDS 59
Customer Satisfaction
In person caregiver discussions to gain valuable insights from the people
that are receiving their services.
Ongoing/Monthly
Caregiver survey is a valuable asset to engage caregivers and make
changes as needed.
Ongoing/Annually
Immediately following the presented recommendations. Staff will be engaged in ongoing and
monthly events including training, cause driven mission strategic planning session updates, and
organizational goals review. Following each event, participants will complete a Likert Scale
survey and the leadership team will complete a checklist of feedback that will assist in providing
customized review feedback. Bright Stars must implement a strategic system that enables them
to take the feedback they receive from the families they serve and put that feedback into action in
real-time, immediately. There should be a system created in order to ensure the feedback is
translated into action. This will require training for Bright Star leadership and staff to help guide
them on how to obtain feedback from caregivers and others, how to do assessment, how to
measure impact, and how to learn from and implement change based on the information
received. This training is essential to ensure that Bright Star staff and leadership are able to
collect and act on caregiver feedback, the feedback can be used to make a difference for those
families served, and families are informed about how their input has made a difference in actions
taken. The post-survey will assess the relevance of the content, participant satisfaction, topic
interest, organizational commitment, and the level of confidence in their skills to provide quality
respite care support. Leadership observations will use the aforementioned checklist to track
attendance, engagement, employee attitude/behavior, and organizational relevance of the
training. For Level 1 and Level 2, the utilization of surveys and leadership feedback will assist
the senior leadership team and board of directors with training alignment to support overall
RAISING SPECIAL NEEDS 60
training learning objectives, confirm learning outcomes, and validate the relevance of the
training in relation to the organization’s strategic vision. Collected surveys and checklists will
serve as a critical starting point for providing sound real-time feedback to support staff and
volunteers during their monthly and or on-going meetings and trainings.
During program implementation. Critical mission-driven educational trainings,
empowerment meetings, and organizational updates are recurring events that after an analysis of
staff/volunteer surveys and leadership feedback, will provide sizable data to be used during
monthly team meetings. During this process the leadership staff will ensure knowledge checks
are in place of the staff’s familiarity and awareness of their roles to support SN families, provide
feedback from observations made during training events, assess staff satisfaction/organizational
milestones, and highlight the staff’s impact on organizational performance. On an annual basis
and on going, the organizational will administer a survey that contains Likert scale items and
open-ended questions designed to capture the support staff’s perspectives on training relevance,
organizational commitment to the cause, and the overall direction of the organization. Analysis
of the annual staff survey will be used in the yearly organizational highlights to attract and
engage donors, and the monthly results will be a guide as to how the organization is doing in an
effort to address areas of improvement. Further analysis of the survey will better position the
organization with data to support if there was a change in the Level 3 Behavior of support staff
as well as evaluating the organization’s Level 4 Results of the performance improvement
program.
Level 2: Learning
Following assessing the reaction to proposed changes, Level 1; the next level of
Kirkpatrick and Kirkpatrick (2016) suggests examining learning that has taken place around the
RAISING SPECIAL NEEDS 61
change. Learning needs to take place for a proposed change to occur, stick, and be effective.
Bright Stars’ staff must have the required knowledge, skills, attitude, and commitment to support
the caregivers, and genuine commitment to support the Level 3 critical behaviors needed for the
organization to reach its performance goal. Implementing recommended solutions will allow
staff to:
1. Have a conscious awareness of their own personal and professional goals.
(Metacognitive)
2. See themselves as an evolving supportive organization that provides innovative
professional continued educational/training opportunities. (Attitude)
3. Increase their media presence within the media professional community to expand
media opportunities after media outreach day(s). (Attitude)
4. Have interest in expanding community outreach by cross-sectional partnerships.
(Interest)
5. Believe that cross team meetings will enhance value and overall success to the
organization. (Expectancy Value)
6. Believe that their service makes a lasting impact to the organization. (Expectancy
Value)
Program. The abovementioned Level 2 learning goals will increase the knowledge and
motivation of respite care staff, which Bright Stars can facilitate by providing cause driven
educational/training opportunities, community outreach partnerships, and mission driven
feedback and support. To develop the support staff’s knowledge and skills, the organization will
provide persistent and innovative educational opportunities to enhance better support staff
outcomes. Current interest by volunteers in the program support the need for the creation of an
RAISING SPECIAL NEEDS 62
on-going learning environment. First, internal stakeholders (Bright Stars staff) within the
organization will schedule/create/ or disseminate on-going mechanisms of information that
support the organization’s current status of families being served and steps taken to increase
those numbers. Next, staff will activate on-going opportunities to increase community interest in
the respite program. These opportunities will be events designed to increase community
involvement, which in turn create greater special needs awareness and further perpetuates Bright
Stars’ need in the community. A greater community stance will hence create a stronger media
demand to include the organization in human-interest stories and feature stories throughout the
entire year. Both of these recurring activities will establish the program’s systematic approach to
serving an underserved population.
Meetings with staff weekly will ensure that there is a fluid pipeline of information that is
being shared in an effort to ensure the staff feels integrated into the mission of providing quality
care respite support. The monthly meetings with staff including the volunteers will enhance a
sense of cross-team alignment and an organization that fosters a non-title culture in which staff
and volunteers feel equally part of a greater cause, which is supporting SN children and their
families. As the growing number of special needs families grows, meeting semi-annually will be
an essential part of the future growth of the organization. This will be a time where the
organization shares the upward mobility, strategic vision, donor goals, and expansion efforts that
are in line to further support SN families.
Evaluation of the components of learning. Kirkpatrick and Kirkpatrick (2016)
suggests that Level 2 Learning is a resource intensive approach and is often conducted in
isolation without regard of a program’s overall goal, therefore, an evaluation should be
conducted on five components of learning: knowledge, skills, attitude, confidence, and
RAISING SPECIAL NEEDS 63
commitment in order to synchronize efforts and economize resources. The Bright Stars team has
a specific performance goal of providing quality respite care in order to support the growing
needs of SN families within the Dallas- Fort Worth Metroplex. In order to appropriately apply a
solution set to reach this goal, the staff must have the required knowledge, skills, motivation,
confidence, and organizational supports. Demonstrating declarative knowledge is often
necessary as a precursor to applying the knowledge to solve problems. It is also equally
imperative that learners value the training as a prerequisite to utilizing their newly acquired
learned knowledge and skills to perform their role. However, they must also be confident that
they can succeed in applying their knowledge and skills and be committed to using them on the
job. An evaluation of declarative and procedural knowledge will assess staff’s (volunteer(s)
ability to both perform and complete tasks. It is also critical to evaluate the attitude, confidence,
and commitment levels of staff/volunteers to determine if they value and will apply the solutions.
Table 12 lists the program’s critical components of learning as well as recommended timing.
Table 12
Evaluation of the Components of Learning for the Program.
Method(s) or Activity(ies) Timing
Declarative Knowledge “I know it.”
Knowledge checks of staff/volunteers awareness of cause driven
goals of organization.
After training events/monthly
meetings
Knowledge checks of community/media partners
awareness of cause driven goals of organization.
After training events/ongoing
Procedural Skills “I can do it right now.”
RAISING SPECIAL NEEDS 64
Review of milestones, education, training and increase in
staff/volunteer base joining organization.
After training events/ongoing
Attitude “I believe this is worthwhile.”
Leadership observations. After training event
Track new staff/volunteers wanting to join Ongoing
Confidence “I think I can do it on the job.”
Feedback from staff/volunteers after training After training event
Commitment “I will do it on the job.”
Feedback regarding individual impact on the
organizational goal.
Ongoing
Level 3: Behavior
Following reaction and learning, Kirkpatrick and Kirkpatrick (2016) suggest
looking at critical behaviors toward accomplishing established goals. The stakeholders of
focus for this study are Bright Stars’ caregivers and, hence, there is a need for them to apply the
appropriate critical behaviors for the organization to achieve its desired outcomes. According to
Kirkpatrick & Kirkpatrick (2016), critical behaviors are the definitive actions of a specified
group, which if consistently performed, will bring about the greatest impact on desired results.
The first identified is that the organizational staff will conduct team meetings that include all
staff to document actions taken to increase the number of SN families served. The second
critical behavior is the implementation of a newly created community outreach plan that outlines
key tactics and strategies to support the communities the organization currently supports and is
RAISING SPECIAL NEEDS 65
trying to reach. The third critical behavior is that Bright Stars will schedule media outreach
meetings with local, regional and trade media in an effort to better educate media for increased
media mentions. The fourth critical behavior is that Bright Stars will document actions to
decrease the SN waiting list to participate in respite care. Lastly, the fifth critical behavior is that
Bright Stars board members will conduct leadership meetings that include all staff to document
actions taken to increase donors and increased donor financial support. The metrics, methods,
and timing of each critical behavior are listed in Table 13.
Table 13
Critical Behaviors, Metrics, Methods, and Timing for Evaluation
Critical Behavior Metric(s) Method(s) Timing
1. Bright Stars will conduct team
meetings that include all staff to
document actions taken to increase
SN families served.
The number of SN
families served will
be tracked.
Bright Stars’ staff will
track new SN families.
Semi-
Monthly
2. Bright Stars will use
a newly developed
community outreach process to on-
board community partners.
The number of
community partners
that partner with
Bright Stars.
Bright Stars’ staff will
track new community
partners.
Weekly
3. Bright Stars will schedule
media outreach meetings with
local/regional/trade media.
The number of media
mentions of Bright
Stars.
Bright Stars’ staff will
document media
mentions in an
electronic library.
Semi-
annual
4. Bright Stars will conduct
team meetings that
include all staff to document
actions taken to decrease SN
waiting list.
The number of SN
families removed
from list.
Bright Stars’ staff will
track the waiting list
and provide a
report summary to
board members and
organizational
leadership.
Monthly
RAISING SPECIAL NEEDS 66
5. Bright Stars board members
will conduct leadership
meetings that include all staff
to document actions taken
to increase donor support.
The number of
increased donor(s)
and donor financial
support.
Bright Stars’ staff will
track donor financial
data.
Monthly
Required drivers. Bright Stars staff and volunteers need support in the form of a
commitment to critical behaviors and the application of required drivers that will further
reinforce the knowledge, skills, and motivation that SN families acquire from the proposed
changes. As mentioned by Kirkpatrick & Kirkpatrick (2016), required drivers serve as an
accountability mechanism that ensures proposed solutions are administered using reinforcement,
encouragement, and the monitoring of activities. Managers play a critical role in employee
engagement and mentorship further proving the use of identified required drivers that will
support efforts to increase organizational commitment simultaneously while increasing SN
families served. Table 14 identifies the required drivers that will support the critical behavior of
internal stakeholders within Bright Stars.
Table 14
Required Drivers to Support Critical Behaviors
Method(s) Timing Critical Behaviors
Supported
1, 2, 3 Etc.
Reinforcing
Provide accurate and timely information on increased
mobility of SN families served.
On-going 1, 4
Encouraging
Activate community interest by providing specific
innovative opportunities to learn more about the
On-going 2,3,5
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organization.
Rewarding
Weekly meetings with staff and monthly meetings with
volunteers to review organizational highlights.
Weekly/Monthly 1,2,3,4,5
Monitoring
Provide information on long-term organizational strategic
goals.
Semi-Annual 1,2,3,4,5
Organizational support. Required drivers require organizational support and
appropriate allocation of resources to ensure that change initiatives or performance improvement
plans can be prosperous. In order to ensure the required drivers are correctly implemented, the
organization will provide continuing support to all critical stakeholders. First, the organization
will provide timely information in real-time to support the effort to increase SN families served.
This will further support the organization’s commitment to solving the growing community need
of respite care. Secondly, the organization will promote a culture that supports community
interest in an effort to increase both organizational and special needs awareness. Bright Stars
must understand and work to nurture a cultural mind-set and organizational realization that staff
and volunteers have choices when it comes to their employment commitment and that of their
volunteers. To that end, the organization will share organizational highlights in an effort to
maintain satisfaction among employees and volunteers. Lastly, the organization will be focused
on providing a continuous level of information on long-term organizational strategic goals to
ensure all staff and volunteers are able to feel like an active owner in the organizational progress
and mobility of the program. The goal here would be to ensure every person whether an
RAISING SPECIAL NEEDS 68
employee or volunteer feels a genuine commitment and like their role is attributing to the overall
mission of Bright Stars.
Level 4: Results and Leading Indicators
Level 4 works to ensure that results are seen from the learning and critical
behaviors to enable achievement of the performance goal, and adjustments can be made as
needed. Table 15 shows the proposed Level 4: Results and Leading Indicators in the form of
outcomes, metrics and methods for both external and internal outcomes for Bright Stars. If the
internal outcomes are met as anticipated as a result of the training and the support in the
accountability package for SN caregivers, the external outcomes should also be realized.
Table 15
Outcomes, Metrics, and Methods for External and Internal Outcomes
Outcome Metric(s) Method(s)
External Outcomes
1. Increase the number of
SN families served.
The number of families that attend
respite care.
Solicit data from start of program to present to
see the attendance trends (gains).
2. Increase community
partnerships.
The number of community
partners currently.
Solicit data of all present and past community
partnerships from the inception of the program.
3. Increase community
exposure.
3a. The frequency of BS media
placements/mentions.
Execute media outreach plan with set # of
media placements in diverse media platforms
such as print, broadcast, and social media.
Create an ongoing human-interest dialogue
within various outlets to create enhanced
exposure.
Internal Outcomes
RAISING SPECIAL NEEDS 69
4. Decrease waiting list
time for families seeking
respite care.
The number of months it takes to
onboard a new family.
Initiate community satellite centers that could
accommodate the overflow and or implement
their own respite care program.
5. Increase donor support
by a determined dollar
amount per year.
The costs it takes to run respite
care support per month per
location.
Generate a strategic plan that prepares for
growth in number of SN families supported.
Data Analysis and Reporting
The Bright Star’s Level 4 Results goal can be evaluated by measuring a conglomerate of
leading indicators to include increasing the SN families served, increasing community
partnerships and lastly, increase media outreach exposure. Data will be collected after each
training event, during monthly meetings, annual events, and from an annual staff/volunteer
survey with the intent of further understanding how the performance improvement program is
assisting the organization in achieving its proposed leading indicators and internal external
outcomes. The findings will be given to the leadership board and will be part of the annual
highlight report. The report will be visible to all paid staff and volunteers within Bright Stars.
The report will also be placed on their website to be accessible to the public which will further
serve for accountability purposes. The report will serve as the primary reporting tool to attract,
retain, and engage donor financial support and new volunteers. Data will be tracked on a
monthly basis in order to understand behavioral trends but more importantly, the measure if in
fact Bright Stars is making a positive difference in the lives of the families they serve. Lastly,
there is an additional annual reporting component to determine if there is an overall increase in
the families served, community partnerships and increase in media placements and whether
additional changes to the performance improvement program are required. Based on the service
Bright Stars provides, the best indication of successful implementation of the proposed
recommendations will be to track the trends of the families they service. As there cannot be
RAISING SPECIAL NEEDS 70
growth, without success. It will be the responsibility of Bright Stars’ leadership to develop a
strategic plan that captures brand reputation and how their client growth translates into a
successful business model. In short, the growth in the number of families being served will
highly rely on a strategic and fluid plan that evaluates the expansion component but also an on-
going evaluation of the support families receive.
Summary
The New World Kirkpatrick Model (2016) was used as a framework to design an
implementation and evaluation plan to incorporate recommendations to close knowledge and
organizational gaps identified through a review of the literature along with data collection and
analysis. The goal of the implementation and evaluation plan is to assess the degree to which the
organization is successfully closing the identified gaps. Closing the identified gaps through
training and information sharing should contribute to the organization’s goal to provide quality
respite care and support to the SN families they serve by optimizing effectiveness in achieving
its mission. Furthermore, a greater awareness and curiosity can be achieved about a sometimes
misunderstood and unknown world of respite care for SN families and their medically fragile
children. Evaluating the implementation of recommendations will allow the organization to
assess the effectiveness of training programs and modify programs, as necessary to further
increase effectiveness.
Limitations and Delimitations of Study
There were several limitations and delimitations, boundaries established by the researcher
of this study, many of which were apparent at the outset of the project while others developed
over two years during which this study was in progress. These include:
• Voluntary participation in the study may have resulted in participation bias;
RAISING SPECIAL NEEDS 71
• The truthfulness of respondents when providing interview answers;
• The study only included recipients of respite care from Bright Stars;
• Though study participants were caregivers, they may not influence the decision-
making process for the organization;
• The study was conducted in a short amount of time with limited resources
preventing a larger sample size.
The SN caregiver participants for this study were selected based on interest expressed
during the recruitment phase of the study. This study may be affected by participation bias as a
result of the voluntary, self-identification of participants. The study focused on caregivers who
access respite care support from Bright Stars. The study interviewed 13 caregivers who
participated in Bright Stars, but their experience may differ from the over 100 families who did
not volunteer to be interviewed for this study. In general, participants seemed truthful and
transparent in providing insight into their level of knowledge and motivation as well as
organizational influences. However, several caregivers could not speak with great confidence
about some knowledge influences as they felt there was more they could know about the
organization and its offerings. Leadership participants were included in the study to provide a
deeper history of organizational decisions contributing to validating or invalidating
organizational influences.
Future Research
This study evaluated eleven assumed knowledge, motivation, and organizational
influences contributing to the organization’s goal to provide quality respite care towards
achieving its mission. Two leadership members in the organization, and 13 caregivers were
interviewed during this study to validate knowledge, motivation, and organizational influences
RAISING SPECIAL NEEDS 72
affecting the organization accomplishing its goal. In future research interviews with additional
leadership and caregivers could be conducted to verify the validity of assumed influences
identified in this study. Additionally, this study did not interview outside experts or community
leaders who may affect this organization’s decision-making process. Future research could
involve them to provide deeper insights into the study’s findings and recommendations. This
research study was also confined to one organization within the Dallas- Metroplex, which
impacts the generalizability of the findings beyond the organization. Expanding the scope of this
research to include additional organizations within the SN community may confirm the validity
of identified influences or validate additional influences. Incorporating other organizations
within the SN community would also be beneficial in determining whether the validated
influences are isolated to one organization in the SN community or are generalizable to other
organizations within the SN community. Additional research regarding respite care and its
effectiveness in helping the SN community is suggested, as respite care, while currently
relatively unknown and practiced, has the potential to offer a tremendous service to SN
caregivers and their families.
Conclusion
The purpose of this study was to examine one organization within the SN community and
evaluate influences affecting the organization’s goal to provide quality respite care by optimizing
effectiveness in achieving its mission. Using the Clark and Estes (2008) Gap Analysis
framework, knowledge, motivation, and organizational influences were studied and evaluated
through a review of literature and interviews with organizational stakeholders. Based on the
findings identified through data collection and analysis, recommendations were proposed to
close knowledge, motivation, and organization gaps affecting the organization’s ability to
RAISING SPECIAL NEEDS 73
accomplish its goal. The Kirkpatrick and Kirkpatrick (2016) New World Model was used to
construct an implementation and evaluation plan to incorporate the proposed recommendations
successfully.
There is impressive evidence to suggest that respite care could provide needed support
for caregivers and their SN children, but its benefits are not currently well known nor are respite
services widely available. Based on this study, caregivers need to know how to access respite
care for their SN children. This lack of knowledge fosters confusion between organizations’
ability to deliver said care and parents’ confidence in their decision of a respite care provider.
Though caregivers’ in this study demonstrated comprehension of organizational processes and
services, including factors contributing to quality respite care, they failed to recognize all of the
resources available to them, including those offered by Bright Stars. Furthermore, the research
suggests that there is value in disseminating information to SN caregivers in an effort to further
increase their knowledge when accessing services and, in particular, respite care services. To do
so, leadership will need a solid framework of what that dissemination, communication, and
community involvement could look like to develop more respite care facilities and resources to
accommodate the growing need within the SN populations. In doing so, Bright Stars can build
partnerships and expand successfully, raise needed money for the organization to meet the needs
of families served, and effectively and unequivocally demonstrate how they are making a
difference in the community. The data presented by this research can be used as a roadmap to
make Bright Stars stronger as an organization but also for other respite care providers to follow
their framework of something that is already working. Successfully implementing the
recommendations discussed in this study could help this specific organization’s ability to achieve
its goal to offer quality respite care to the community it serves in achieving its mission. On a
RAISING SPECIAL NEEDS 74
larger level, the findings and recommendations could help other community organizations build
upon the existing framework already established by Bright Stars’ respite care offerings for
special needs families, a service that holds the potential to offer tremendous benefits to families
and their special needs children.
RAISING SPECIAL NEEDS 75
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Appendices
Appendix A: Participating Stakeholders with Sampling Criteria for Interview and
Observation
Participating Stakeholders
Interview Criteria and Rationale
Criterion 1: Caregivers who allow their SN and neurotypical children to attend respite
Criterion 2: Caregivers with SN children that have various diagnoses other than autism
Criterion 3: Caregivers from the Latino/Hispanic community that can offer a multi-cultural
perspective and also non-Latino caregivers.
Interview Strategy and Rationale
Autism is a 21
st
Century public health crisis that researchers are still learning about daily.
As such, this research will explore respite care for families with children with autism from a
variety of different angles. To best understand how families with SN children use and benefit
from respite care, families who use the respite care services of Bright Stars will be interviewed,
specifically around their knowledge of and motivation toward the services. The research
questions focus on the role knowledge and motivation toward the services. Further leadership
within Bright Stars will be interviewed to provide a fuller picture of the services provided and
the organizational influences on those services. Interviews with both caregivers and leadership
will help provide more than one perspective on the role of respite care. Furthermore, the use of
multi data-collection methods will help to strengthen the validity of this qualitative study, while
also decreasing the probability of bias (Glesne, 2006). Interviews will first be conducted with the
caregivers in order to understand their concerns and perspective of the study.
Observation Criteria and Rationale
RAISING SPECIAL NEEDS 81
Criterion 1: Caregivers who allow their SN and neurotypical children to attend respite
Criterion 2: Caregivers with SN children that have various diagnoses other than autism
Criterion 3: Caregivers from the Latino/Hispanic community that can offer a multi-
cultural perspective
Observation Criteria and Rationale
In an effort to further improve the semi-structured interviews regarding respite care,
observing respite care will also be done. These respite care nights are prescheduled with the
Bright Stars in advance.
RAISING SPECIAL NEEDS 82
Appendix B: Protocols
Interview Protocol: Semi-structured Interview
Introduction
a. Introduce yourself.
b. Thank the participant for helping you with this interview.
c. Explain the purpose of the interview to help key stakeholders understand the impact
about their interaction with the organization.
d. Explain that their participation is strictly voluntary. They can stop the interview at
any time and can skip any question they choose.
e. Explain that their responses are anonymous: you will not be naming them in your
research study, nor will you attribute anything said to a specific person. You will not
discuss what they said, using their name or any identifiable characteristics with
anyone else.
Interview Questions:
1. Tell me about the respite care services provided by Bright Stars? (K)
2. How did you hear about the services provided by Bright Stars? (K)
3. What influences your decision to bring your children to Bright Stars? (M)
4. Describe the main reason you are a client? (M)
5. How would you describe your family’s experience with Bright Stars? (O)
6. Is there anything you would like to see added and or changed with the services provided?
(O)
7. If you had to influence another client to come to Bright Stars, what would you tell them?
(M)
8. What has having the resources (respite care program) of Bright Stars done for your
family? (M)
9. Describe your child prior to respite care and after joining Bright Stars? (M)
10. Other than Bright Stars what are options (caregiving) for your loved one, if any? (K)
11. Specifically, can you describe the resources offered by Bright Stars respite care program?
(K)
12. How would you describe the care your child (ren) has received at Bright Stars? (O)
13. How would you describe the care your loved one would receive without the support of
Bright Stars?
RAISING SPECIAL NEEDS 83
Appendix C: Observation Protocol
Observer’s Name:___________________________
Observation Activity: ______________________________________ Date:_____________
Time: ____________
Duration of Activity: _____________
1.) Time Spent Observing: Start:________ End:___________ Total: ________________
2.) Activity and materials:
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
3.) Does the activity/activities seem tailored to targeted population? YES ________ NO ______
4.) Do the SN children seem engaged? YES _________ NO ___________
In a narrative, describe the activities taking place.
TIME
_____________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
RAISING SPECIAL NEEDS 84
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
TIME
_____________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
[Reflective comments: questions to self, observations of nonverbal behavior, my interpretations]
RAISING SPECIAL NEEDS 85
Appendix D: Credibility and Trustworthiness
Ensuring the credibility and trustworthiness of my study is essential in making sure that
my readers find my research a useful offering into the body of literature on the topic (Patton,
2015). Much of which is done through internal validity, which looks at whether or not the study
measures what it intends too. Thus, research design is a major part of what makes a study both
credible and trustworthy (Merriam & Tisdell, 2016). Shenton (2004) states that one way to
ensure credibility in a qualitative study is to build off of recognized and respected studies on the
topic. Taking that in to account, I will be designing observations and interviews that are
comparable to ones that other researchers have successfully utilized before me. Since I am
looking at the role knowledge and motivation play in how caregivers access respite care services
for their loves ones, I plan to start with the use of other studies. The use of research data will add
to the credibility of my study because it is a foundational basis for my research findings. In
addition, it will also give me the opportunity to use the information I gather to create specific
questions for respondents during the interview process. It will also allow me to incorporate
relevant questions gleamed from what the organization states is their program design and that
requires respondents to reflect on how their motivation and knowledge align with what the
organization states they do. In addition, I plan to conduct observations that will allow me to
compare if what I am observing matches the way participants responded in their interviews. This
use of triangulation will provide me the opportunity to use a variety of different data analyses
methods to ensure that I am getting credible results while compensating for any limitations that
each individual method may have (Shenton, 2004). The use of both interviews and observations
will also enable me to refine my research methods as I can change and strengthen my research
design as I go (Shenton, 2004).
RAISING SPECIAL NEEDS 86
Research also shows that ensuring credibility is one of most important factors in
establishing trustworthiness (Shenton, 2004). If the reader believes that the study has been
performed ethically, then the findings of the study will be believed (Merriam & Tisdell, 2016).
Consequently, it is important that I am continuously evaluating the techniques I am utilizing
during the data collection method, recording my general impressions on the data collected, and
am consistently generating theories that come strictly from the data, but can be tweaked with
each additional new finding (Shenton, 2004). In this study, it is always my intention to ensure
credibility and trustworthy by eliminating as much bias as I can. According to Patton (2015), my
credibility as a researcher is important because if the reader does not trust me they will not trust
the data collection or analyses I present in the study. Thus, in order to bolster the trustworthiness
of my study, I will provide biographical information and state any potential biases up front.
Since bias has a way of making its way throughout a study, I will keep personal journal notes
that reflect my unvarnished observations and reflect on them throughout the data collection
process. I will also state my relationship to the organization, ensure the confidential nature of the
study and constantly check for accuracy by paying close attention to my transcripts and allowing
participants the opportunity to read any transcripts of the interview. It is also important that any
field notes that I produce includes the contextual meaning of all the information accumulated as
detailed descriptions will alleviate some concerns if the findings come under scrutiny (Shenton,
2004). Also, as I have mentioned before, if I can show that my findings correlate with those of
respected literature in the field, it will go a long way to establishing the trustworthiness of my
study and findings as a researcher.
RAISING SPECIAL NEEDS 87
Appendix E: Validity and Reliability
While credibility and trustworthiness in qualitative studies deals with phenomena,
quantitative data deals with hard facts (Merriam & Tisdell, 2016). As a result, in quantitative
studies, rigor is determined through an evaluation of the validity and reliability of the tools or
instruments utilized in the study. In quantitative research validity denotes how accurate a testing
instrument is in measuring what it purports to measure, whereas reliability denotes the extent to
which a test produces consistent results (Salkind, 2016). Creswell (2008) stresses that in
quantitative studies, it is important to look at the threats to the validity of your service design,
which includes instrumentation and confusion of treatment. It is important to recognize, that
validity can be measured in three ways --- content validity, construct validity, and criterion
validity. Content validity looks at whether or not the data instrument used actually measures
what it was intended to measure. Construct validity refers to whether you can draw inferences
about the subject being studied (Creswell, 2008).
RAISING SPECIAL NEEDS 88
Appendix F: Ethics
My responsibilities as a qualitative researcher are to ensure that I discover the narrative
behind the experiences of my participants. According to Maxwell (2013), well-constructed,
focused questions are generally the result of an interactive design process, rather than the starting
point for developing a design. To ensure this happens, I will administer informed consent to all
participants prior to the interviews. This will allow participants to feel confident and further
acknowledge their participation is voluntary. The data will be safe guarded in a locked filing
cabinet within my home that is only accessible via a code, which I will be the only person with
that code. Furthermore, in order to further ensure the safety of the participants and their identities
I will submit my study to the University of Southern California Institutional Review Board (IRB)
and will adhere to their rules and guidelines. My relationship to the organization is one as a
consumer of services. As an autism mother, I depend on the respite services from the
organization. While, I am not a leader or supervisor, my potential interest in the results of the
project are to evaluate the level of expectations to which the organization is meeting the needs of
the caregivers they support. I will clearly state my role as an autism mom and client to the
subjects of my study. I will address their concerns and or questions throughout the process to
further gain their confidence and trust.
Limitations and Delimitations
The anticipated limitations from the respondents are their willingness to be 100% truthful
about their experiences with the organization. Many of the respondents might feel like their
answers will affect their ability to participate further in their respite support for their child(ren).
To date, the only limitation I foresee is the truthfulness of the responses from the participants.
The organization is interested in the data as a means to improve the services they offer. I have
RAISING SPECIAL NEEDS 89
chosen observations and interviews with the caregivers of the organization. I decided the
caregivers (parents) are the main beneficiaries of the services the organization provides. They
would be the best subjects to interview related to the services they do or do not receive from the
organization.
Abstract (if available)
Abstract
Respite Care is a relatively new mainstream level support that has been brought to light by the growing need to support special needs (SN) families of medically fragile children. While traditionally respite care was once commonly known for the elderly population, it is now more popular among the SN community. The purpose of this study was to use a modified gap analysis framework (Clark & Estes, 2008) to evaluate knowledge, motivation, and organizational (KMO) influences related to respite care support within a non-profit organization that supports the SN community. Following a review of the literature, assumed KMO influences on performance were examined through a qualitative, emergent design. Assumed influences were validated or invalidated through analysis of interview data. A comprehensive implementation and evaluation plan following the New World Kirkpatrick Model (Kirkpatrick & Kirkpatrick, 2016) is presented to move the recommended solutions into action and to measure their effectiveness. The recommendations offered in Chapter Five are intended to increase stakeholder’s knowledge and motivation and reduce gaps in organizational influences to achieve the organization’s goals.
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Asset Metadata
Creator
Espino, Elvia Lynn
(author)
Core Title
Raising special needs: an evaluation study of respite care for medically fragile children living with autism and other illnesses
School
Rossier School of Education
Degree
Doctor of Education
Degree Program
Organizational Change and Leadership (On Line)
Publication Date
10/19/2018
Defense Date
10/19/2018
Publisher
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Tag
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