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Hidden perspectives: narratives of female family caregiver experiences
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Content
Hidden Perspectives: Narratives of Female Family Caregiver Experiences
by
Eleana Liou
Rossier School of Education
University of Southern California
A dissertation submitted to the faculty
in partial fulfillment of the requirements for the degree of
Doctor of Education
December 2024
© Copyright by Eleana Liou 2024
All Rights Reserved
The Committee for Eleana Liou certifies the approval of this Dissertation
Eric Canny
Maria Ott
Monique Datta, Committee Chair
Rossier School of Education
University of Southern California
2024
iv
Abstract
Cultural diversity and an aging population are both rapidly increasing in the United States. The
role of family caregivers (FC) has never been more critical and more challenging. This
qualitative study delves into the often unseen and unrecognized experiences of an invisible
workforce in health care. Twelve female FCs navigating the complex landscape of unpaid family
caregiving shared their stories through in-depth narrative interviews. Representing a broad
spectrum of cultural backgrounds, each revealed the physical, emotional, and financial burdens
they carry. Using Foronda’s (2020) theory of cultural humility, the study exposed how cultural
factors, such as language barriers, deeply ingrained family roles, and divergent expectations,
compound the already overwhelming challenges of caregiving. As FCs struggle to balance their
cultural identities with the demands of family and the U.S. health care system, they are left
vulnerable and at risk of burnout. This study underscores the need for health care systems to
prepare, recognize, and support FCs by implementing culturally sensitive interventions, such as
tailored education, resources, and support programs for caregivers, a family-centered care (FCC)
model, and a comprehensive caregiver assessment. These interventions are not only beneficial,
but they are also essential to reducing health disparities and ensuring the well-being of both FCs
and the patients they serve. By bringing these hidden perspectives to light, this research calls for
urgent action to address the growing family caregiving crisis.
Keywords: family caregiver, caregiving, multicultural identity, cultural humility, cultural
diversity, health care, serious illness, cross-cultural communication, family-centered care
v
Dedication
To my partner and three children, for enduring my quirks, listening to my impromptu debates on
everything under the sun, and being so self-sufficient that I could chase this dream of mine. Your
support and love kept me grounded through this journey.
To my brother, for our intellectual adventures together and shared academic experiences that
fueled me through the tough moments.
To my mother, for your eternal support of my pursuit of knowledge.
To my late father, though you did not get to see me achieve this dream, I hope I would have
made you proud.
vi
Acknowledgements
First, my deepest gratitude is reserved for my chair, Dr. Monique Datta, whose expertise,
dedication to excellence, and unwavering support illuminated my path. Your resolve to guide me
when I felt adrift, your patience with my solitary ways, and your gift for pushing me to think
deeply and expand the boundaries of my work are treasures for which I am immensely and
forever grateful.
I would also like to extend my heartfelt thanks to my committee members. Dr. Eric
Canny, your critical feedback and thought-provoking lessons urged me to explore deeper waters
and broaden the horizons of my work and understanding. I will carry your teachings with me
always. Dr. Maria Ott, your insights and encouragement gave me strength and enriched this
research. For both your time and dedication, I am profoundly grateful.
To the faculty, especially Dr. Marc Pritchard, whose steadfast critique and precise
templates guided my colleagues and I toward success in this doctoral journey; thank you for the
exceptional learning environment fostered in this OCL program.
I am also deeply grateful to my incredible study group; your camaraderie has been my
strength and motivation. Thank you for being both my sounding boards and my cheerleaders.
Finally, a special acknowledgment goes to the participants of this study. Your courage in
sharing your personal stories; your grief, loss, and vulnerability; brought this study to life.
Without your openness, this work would not exist. I hope that this research does justice to the
trust you placed in me.
Author Note
Eleana Liou has no conflicts of interest to disclose. Correspondence regarding this
dissertation should be addressed to eleana.liou@live.com.
vii
Table of Contents
Abstract .......................................................................................................................................... iv
Dedication ....................................................................................................................................... v
Acknowledgements ........................................................................................................................ vi
Author Note ................................................................................................................................... vi
List of Tables .................................................................................................................................. x
List of Figures ................................................................................................................................ xi
List of Abbreviations .................................................................................................................... xii
Chapter One: Introduction to the Study .......................................................................................... 1
Context and Background of the Problem ............................................................................ 1
Statement of the Problem .................................................................................................... 3
Purpose of the Study and Research Questions .................................................................... 4
Importance of the Study ...................................................................................................... 5
Overview of Theoretical Framework and Methodology .................................................... 5
Definition of Terms............................................................................................................. 6
Organization of the Study ................................................................................................... 9
Chapter Two: Review of the Literature ........................................................................................ 11
The Role of Family Caregiving ........................................................................................ 11
The Triadic Relationship................................................................................................... 17
Evolution of Health Care Communication ....................................................................... 21
A Diversifying Cultural Society ....................................................................................... 23
Conceptual Framework ..................................................................................................... 31
Conclusion ........................................................................................................................ 38
viii
Chapter Three: Methodology ........................................................................................................ 40
Research Questions ........................................................................................................... 40
Overview of Design .......................................................................................................... 40
Research Setting................................................................................................................ 41
The Researcher.................................................................................................................. 41
Data Sources ..................................................................................................................... 42
Participants ........................................................................................................................ 43
Instrumentation ................................................................................................................. 45
Data Collection Procedures ............................................................................................... 46
Data Analysis .................................................................................................................... 46
Credibility and Trustworthiness ........................................................................................ 48
Ethics ............................................................................................................................... 48
Chapter Four: Findings ................................................................................................................. 50
Participants ........................................................................................................................ 50
Findings Related to Research Question One .................................................................... 53
Findings Related to Research Question Two .................................................................... 76
Discussion on Research Question One ............................................................................. 85
Discussion on Research Question Two ............................................................................. 86
Summary ........................................................................................................................... 89
Chapter Five: Recommendations .................................................................................................. 92
Recommendations for Future Research .......................................................................... 100
Limitations and Delimitations ......................................................................................... 102
Conclusion ...................................................................................................................... 103
ix
References ................................................................................................................................... 105
Appendix A: Interview Protocol ................................................................................................. 119
Appendix B: Recruitment Flyer .................................................................................................. 127
Appendix C: Information Sheet .................................................................................................. 128
Appendix D: Participant Narratives ............................................................................................ 129
x
List of Tables
Table 1: Self-Identified Demographic Data of Participants...................................................... 51
xi
List of Figures
Figure 1: Rainbow Model of the Cultural Humilty Theory........................................................ 35
Figure 2: Research Question One: Result of Themes ................................................................ 52
Figure 3: Research Question Two: Result of Themes................................................................ 76
xii
List of Abbreviations
AARP American Association of Retired Persons
ACP Advance Care Planning
EOL End of Life
CDC Centers for Disease Control and Prevention
COVID-19 Coronavirus Disease 2019
FC Family Caregiver
FCC Family-centered Care
GOC Goals of Care
HCP Health Care Provider
MAID Medical Aid in Dying
NASEM National Academies of Sciences, Engineering, and Medicine
NIH National Institutes of Health
PCC Person-centered Care or Patient-centered Care
WHO World Health Organization
1
Chapter One: Introduction to the Study
The need for caregiving is rapidly increasing yet supporting family caregivers (FC) is
among the most significant overlooked issues facing the aging U.S. population (National
Academies of Sciences, Engineering, and Medicine [NASEM], 2016). FCs are an invisible but
essential workforce in health care, often being the core of what sustains a seriously ill person at
the end of life (EOL) (Bell et al., 2019; Rabow et al., 2004). Yet, FCs experience a 63% higher
chance of mortality, along with their own burdens related to time and logistical demands,
physical tasks, financial costs, and mental and physical health risks (Rabow et al., 2004). Within
health care, there exists a triadic relationship between a patient, FC, and the health care team that
adds complexity and increases the chance for conflict (Greene & Adelman, 2013).
Communication within this triadic relationship has a strong influence on the caregiving
experience (Francois et al., 2017). Moreover, family caregiving exists in the context of culture
and personal values where sociocultural differences require inclusive intervention approaches
from health care providers (HCP) (Bell et al., 2019). The U.S. population will grow increasingly
older and more diverse, with people who are over 65 years of age increasing from about 17% to
23% by 2060, people who are Two or More Races increasing from about 6% to 9% by 2060, and
the foreign-born population projected to grow from about 14% to 17% by 2060 (U.S. Census
Bureau, 2023). The need for HCPs to better understand and support multicultural caregiving is
imperative (Bell et al., 2019). The purpose of this study is to explore cultural experiences from
the FC's perspective and understand the challenges they experience in their role.
Context and Background of the Problem
There is an expanding health care approach called person-centered care (PCC) to improve
safety, coordination, and quality of life by prioritizing individual needs, preferences, values, and
2
unique circumstances of patients (The American Geriatrics Society Expert Panel on PersonCentered Care, 2016). Centering around the individual patient, Krones et al. (2023) described
two key concepts of PCC, which includes advance care planning (ACP) and shared decisionmaking, both of which require a commitment to what matters most to individuals and their loved
ones. With PCC evolving to the forefront of health care delivery and reform, this is also the time
to elevate family-centered care (FCC) alongside it (NASEM, 2016). FCs provide the majority of
care for aging individuals or those with serious illness (Bell et al., 2019). While caregiving can
be rewarding, Bell et al. stress how the role affects the physical, mental, social, spiritual, and
financial health of FCs. In serious illness situations, the effects intensify due to the extra hours
needed, greater likelihood to perform medical and nursing tasks, and the involvement of complex
health care decision-making (Bell et al., 2019).
According to the National Academies of Science, Engineering, and Medicine (NASEM)
in 2016, FCs often serve as the source of information about a patient’s health history and
represent patients in dealing with HCPs and medical staff, hospitals, pharmacies, assisted living
facilities, and nursing homes. Without a doubt, communication plays a key role in the FC
experience within health care. Communication is an essential part of the support that FCs and
patients provide each other and affects the well-being of both groups (Fletcher et al., 2012). In
addition, unique attributes of culture exist within every individual and a fundamental part of
culture is language and communication (Zegers & Auron, 2022).
Observational studies show communication on prognosis for the seriously ill occurs
infrequently and are rarely initiated by physicians (Heyland et al., 2009). Furthermore, HCPs
avoid discussing ACP with certain racial and ethnic groups (Ashana et al., 2021). These racial
and ethnics groups include African American, Hispanic, Asian, and Native American groups,
3
non-English speakers, and persons with certain religious beliefs (Ashana et al., 2021). Many
patients of underrepresented cultural and language backgrounds do not have advance care plans
nor advance directives (Johnstone & Kanitsaki, 2009).
Another phenomenon includes the mainstream belief in Western society, which is patient
autonomy being the moral foundation of health care (Johnstone & Kanitsaki, 2009). The idea is
that an HCP may be an expert within their medical specialty, but a patient is the expert within
their individual beliefs and personal values, therefore, their right to self-determination is
paramount (Johnstone & Kanitsaki, 2009). However, in a culturally diverse society, people have
various cultural beliefs and may oppose this idea and place higher value on family connectedness
than individual autonomy (Candib, 2002). Consequently, the intersection of communication,
culture, and health impacts health equity (Zegers & Auron, 2022). In short, the health care vortex
(Sturmberg, 2011) and emotional fragility in serious illness situations combined with poor
communication, differences in opinions about goals of care (GOC), or distinctions in culture
trigger conflict between the complex triadic relationship of patients, FCs, and the health care
team (Francois et al., 2017).
Statement of the Problem
FCs of seriously ill patients in the U.S. health care system experience various challenges.
In addition, because the U.S. population is aging and becoming more diverse (U.S. Census
Bureau, 2023), the need for FCs is only increasing. This trajectory will cause more people to
experience the challenges that often come with the role of an FC. Currently, projections show
less than one-half of children in the United States are non-Hispanic White and by 2030, one in
five Americans will be 65 years and older (Vespa et al., 2020). It is evident FCC, along with
caregiving experiences need to become an integral part of the health care process (NASEM,
4
2016). A key factor affecting this experience and the complex triadic relationship that exists
between a patient, FC, and the health care team is communication, particularly cross-cultural
communication, which directly impacts health, wellness, and equity (Francois et al., 2017;
Zegers & Auron, 2022).
Over time, cultural diversity and sociocultural differences require a shift to finding
inclusive intervention approaches for patients and FCs (Bell et al., 2019). The practice of
medicine has evolved from a traditional care model to a PCC model that challenges paternalism
(Krones et al., 2023). Research is also recognizing the potential physical, mental, and financial
risks involved for FCs (NASEM, 2016). FCs, especially those caring for seriously ill loved ones,
face multiple self-risks and need better support within a U.S. health care system growing more
culturally diverse (Bell et al., 2019).
Purpose of the Study and Research Questions
The purpose of this study is to explore the cultural experiences of FCs and better
understand the challenges they experience in their roles. The study is a narrative inquiry using a
cultural humility framework to focus on two areas. First, to examine the types of challenges an
FC encounters in the U.S. health care system when caring for a seriously ill adult. Secondly, to
gain better understanding of how cultural factors like world view, diversity, political climate,
personal beliefs and values, individual situation, and physical environment influence
perspectives, decision-making, and the needs of an FC in complex health care situations. The
research questions that guide this study include:
1. What do FCs describe as the challenges they experience in their role?
2. How do cultural factors impact FC experiences?
5
Importance of the Study
The United States has a growing demand for families to provide care for an aging and
more diverse population (NASEM, 2016). The majority of care for this population depends on
FCs (Bell et al., 2019). Simultaneously, caregiving itself comes with physical, mental, and
economic risks (NASEM, 2016; Schulz & Sherwood, 2008). In this study, FCs are individuals
who aid with decision-making and provide a broad range of help for a seriously ill person they
have a significant personal or familial relationship with. On top of the potential risks that FCs
take on, they are also an often overlooked and invisible workforce in the world of health care
(Bell et al., 2019). By exploring the diverse nature of family and the helping relationships
through a FC perspective, the study hopes to help the health care industry better understand the
complex challenges FCs face and the need for improved cross-cultural communication and
support. More understanding in this area is critical to improve health and decrease health
disparities for patients and FCs (Zegers & Auron, 2022). Ultimately, steering the U.S. health care
system toward integration of FCC in a culturally diverse society.
Overview of Theoretical Framework and Methodology
Foronda’s (2020) theory of cultural humility is the conceptual framework guiding this
study. Cultural humility is a concept that incorporates self-evaluation and critique. It addresses
and redresses power imbalances, develops mutually beneficial partnerships, and is an enduring
commitment with ongoing engagement (Tervalon & Murry-Garcia, 1998; Zegers & Auron,
2022). Foronda blended evidence and concepts from medicine, nursing, and education to form
the rainbow model of cultural humility as a framework to practice being culturally humble.
Factors like diversity, historical precedent, politics, personal beliefs, environment, and situational
context overlap to present an overall framework that influences the perspectives of an individual,
6
group, or community, which then leads to the intersection of cultural conflict when differing
perspectives arise (Foronda, 2020). According to Zeger and Auron (2022), language and
communication are fundamental elements of culture, therefore this theory of cultural humility
may be a proxy to help understand the challenges of cross-cultural communication and support
for the unique positions of FCs. Viewing this qualitative study through the lens of cultural
humility presents a new approach toward examining diversity and perceptions underlying this
problem of practice (Foronda, 2020).
Definition of Terms
The following definitions provide clarity for their use throughout this study.
Advance Care Planning (ACP): Process where a patient consults with HCPs, family
members, and others important to them to make decision about their future health care
(Krones, et al., 2023).
Advance Directive: a legal document, often in the form of a living will or durable power
of attorney for health care that has instructions for your wishes and preferences for
medical care (National Institutes of Health [NIH] National Institute on Aging, 2022).
End of Life (EOL) Care: medical care that includes physical, emotional, social, and
spiritual support, given to people who are near the end of life and have stopped treatment
to cure or control their disease (National Cancer Institute, n.d.).
Culture: a dynamic culmination of interpretations, lived experiences, health beliefs,
reactions, and anticipation of future events that create an important focus on time,
context, and historical perspectives, which is individually determined and situationally
influenced (Zegers & Auron, 2019).
7
COVID-19 pandemic: The coronavirus disease 2019 (COVID-19) pandemic is a global
outbreak of an infectious disease caused by a coronavirus called SARS-CoV-2, which
lasted more than three years and caused a Public Health Emergency of International
Concern (Word Health Organization (WHO), 2024).
Cultural Competence: application of knowledge about the specific standards, policies,
practices, and attitudes of individuals and groups of people (Zegers & Auron, 2019).
Cultural Humility: a process of self-reflection and lifelong learning that “refers to the
recognition of diversity and power imbalances among individuals, groups, or
communities, with the actions of being open, self-aware, egoless, flexible, exuding
respect and supportive interactions, focusing on both self and other to formulate a tailored
response” (Foronda, 2020, p. 9).
Family Caregiver (FC): a role reflecting the personal and diverse nature of family and
helping relationships, which provides health and medical care at home, navigates the
complicated and fragmented health care system, and serves as surrogate decision makers
(NASEM, 2016). For the purpose of this study, this term refers to an individual who has a
significant personal or familial relationship with a seriously ill adult whom they provide
unpaid family caregiving support for.
Family Caregiving: the broad range of help provided by a FC, including assistance with
basic needs, such as meals, shelter, transportation, or personal care, social and emotional
support, coordination of health care appointments and related needs, assistance in health
care decision-making, medication management, medical or nursing tasks in the home,
and the job of advocate and surrogate for legal and financial matters (Bell et al., 2019).
8
Family-centered care (FCC): mutually beneficial partnerships between HCPs, patients,
and families in health care planning, delivery, and evaluation, where they decide how the
defined “family” involved will participate in care and decision-making (Institute for
Patient- and Family-Centered Care, n.d.; Kokorelias et al., 2019).
Filial Piety: defined as adult children's attitudes and obligations to their parents and is
increasingly regarded as a universal family virtue or responsibility in aging countries
(Pan et al., 2021).
Goals of Care (GOC): the overall aim to reach shared medical intervention and treatment
decisions between HCPs, patients, and their families that are based on the patients’
primary values and priorities (Secunda et al., 2019).
Health Care Provider (HCP): a licensed person or organization that provides medical
care services (National Cancer Institute, n.d.).
Inpatient: describes a setting where a patient stays overnight for diagnosis or treatment
Outpatient: describes a setting where a patient does not stay overnight for diagnosis or
treatment (National Cancer Institute, n.d.).
Paternalism or Medical Paternalism: in medical practice, this term refers to when a
physician or other HCP makes decisions for a patient without the explicit consent of the
patient (University of Missouri School of Medicine, (n.d.).
Patient autonomy or also known as Self-determination: in health care, individual choice
is the right of competent adults to make informed decisions about their own medical care
and is the principle that requires the consent or informed agreement of the patient before
any investigation or treatment takes place (British Medical Association, 2020).
9
Person-centered Care (PCC) or Patient-centered Care: health care that prioritizes
individual needs, preferences, values, and unique circumstances of patients (The
American Geriatrics Society Expert Panel on Person-Centered Care, 2016).
Prognosis or Prognostication: estimated outcome of a disease or the chance of recovery
or recurrence (National Cancer Institute, n.d.).
Quality of Life: the overall sense of well-being and enjoyment of life, often impacted by
the effects of disease, its treatment, or outcome on an individual (National Cancer
Institute, n.d.).
Self-determination or also known as Patient autonomy: in health care, individual choice
is the right of competent adults to make informed decisions about their own medical care
and is the principle that requires the consent or informed agreement of the patient before
any investigation or treatment takes place (British Medical Association, 2020).
Serious illness: a condition that carries a substantial risk of mortality and either
negatively impacts a person’s daily function or quality of life, or excessively burdens
their caregivers (Kelley & Bollens-Lund, 2018).
Shared Decision-making: a concept of communication, education, and decision-making
between physician, patient, and team entailing formal informed consent, considered as
the target for person-centered care (Krones, et al., 2023).
Organization of the Study
This dissertation follows a traditional five-chapter model. Chapter One introduces the
study, briefly describes the need to better support FCs, shares the purpose of exploring the FCs’
cross-cultural experiences and their challenges, defines the research questions, clarifies the terms
used and commonly referred to in serious illness situations, summarizes the cultural humility
10
conceptual framework, and outlines the order of the study. Chapter Two highlights a review of
relevant literature surrounding the scope of the study and further explains the cultural humility
framework. Relevant literature topics will include the roles involved in family caregiving, how
the U.S. health care system is facing an FC crisis, the history of health care communication, the
insight into HCP viewpoints, the evolution of health care models over time, and exploration of
the complexities of culture within health care. Chapter Three focuses on cultural humility factors
and the qualitative methodology for choosing participants, data collection, and analysis. Chapter
Four synthesizes, analyzes, assesses, and presents the data and findings. Finally, Chapter Five
proposes recommendations for addressing how health care can improve support for the oftenoverlooked group of FCs.
11
Chapter Two: Review of the Literature
This chapter provides a review of the literature based on a cultural humility framework.
Key concepts addressed will include the role of FCs, the family caregiving crisis, the complex
relationships of each role involved in health care planning, the history and evolution of health
care communication, and the data that reflects the growing need to support FCs through the U.S.
health care system. Because the problem with the lack of communication and support for FCs in
health care occurs in various settings like EOL, aging and disabled adults, different diseases, and
pediatric care, this study will draw upon literature and primarily focus on the health care
experience through a cultural lens for FCs supporting primarily adults that are disabled, seriously
ill, or at EOL.
For the purpose of navigating this chapter, the first section provides a detailed overview
of family caregiving, what it entails, who it commonly includes, where the major need is headed,
how it relates to the other roles involved, and the different viewpoints that exist. The next section
provides an overview of the history of health care communication, why the problem exists, what
the problem is ultimately rooted in, and the evolution that played a part in formulating the
problem. The third section provides a report of projections expected to worsen the problem and
explains why the world is progressing as a diverse and cultural society, with concepts of current
health care explained, and what resolutions may help this problem. Then, the next section details
the theory of cultural humility as the conceptual framework, the concepts involved in this theory,
and how it applies to this study and the problem of practice.
The Role of Family Caregiving
In 2016, the Committee on Family Caregiving for Older Adults, Board on Health Care
Services, and Health and Medicine Division worked with the National Academies of Science,
12
Engineering, and Medicine (NASEM) to provide a comprehensive, evidence-based analysis for
United States public policy regarding the role of FCs. Their analysis supplies a majority of the
national data on family caregiving, a traditional role that requires continuous adjustments and
wearing multiple hats.
The role of an FC is an essential part of the U.S. health care industry and an important
public health need (Centers for Disease Control and Prevention (CDC), 2019). It is customary to
rely on families to provide emotional support and to assist older or ill parents, grandparents, and
other family members with household tasks or personal care when they can no longer function
independently (NASEM, 2016). This tradition has evolved with the addition of more tasks to
take on such as health and medical care at home, or the navigation of a complicated and
fragmented health care system, or assistance as a surrogate decision maker (NASEM, 2016).
Moreover, NASEM documented at least 17.7 million individuals in the United States who are
FCs of someone age 65 and older who need support due to a limitation in their physical, mental,
or cognitive functioning. According to Wolff et al. (2017), spouses or adult children make up
about 85% of the primary FCs for older adults. Wolff et al. also estimated more than 95% of
caregivers live within 30 minutes of the older adults they helped, while about three in four
caregivers live in the same household. The average hours of assistance FCs provide are 30 or
more hours each week but varied by relationship over time and is increasingly longstanding,
lasting for more than 4 years for 64.1% of FCs (Wolff et al., 2017). Furthermore, trends show
older adults have become more functionally impaired with those receiving help from an FC
increasing from 18.1% in 1999 to 26.0% in 2015. In 2020, approximately 53.0 million people
living in the United States provided care to an adult relative or friend, which totals to about one
in five Americans and is more than the previous 43.5 million FCs in 2015 (American Association
13
of Retired Persons (AARP) & National Alliance for Caregiving, 2020). These data points
demonstrate the growing demand for FC support in society.
The dynamic nature of caregiving evolves throughout the trajectory of the disease or age.
While it can decline, ramp up, or change back and forth, it often increases both complexity and
scope of responsibilities for FCs, including issues that arise from the FC taking on a role as a
surrogate decision maker (NASEM, 2016). FCs must interact with a wide range of HCPs in a
variety of systems as the surrogate decision maker. They communicate with physicians,
physician assistants (PAs), nurses, nurse practitioners (NPs), social workers, psychologists,
pharmacists, physical and occupational therapists, certified nursing assistants (CNAs), home
health and personal care aides, and many others (NASEM, 2016). FCs have the important
responsibility to supply information about a patient’s social support system and health histories,
such as medications, past diagnoses, and previous treatments and surgeries (NASEM, 2016). In
other words, communication support for the patient is a major part of the FC role.
Another aspect to consider is the reality Medicare and other insurance payers’ financial
incentives typically encourage shorter hospital stays, which often comes with the implied
expectation that family members can support the older adult at home and manage the transition
from hospital to home and back again (NASEM, 2016). This implied expectation comes with
little or no training to manage home care, which includes managing technical procedures and
equipment for older adults at home. For instance, FCs may need to manage feeding and drainage
tubes, catheters, and tracheostomies, and monitor health conditions (NASEM, 2016). This means
FCs regularly take on a complex, medical-related job with little to no prior training.
It is clear FCs play an integral role in the care of older adult patients with health needs.
The experiences of both individual roles interconnect with the physical and psychological health
14
of FCs negatively affected when a patient’s treatment symptoms increase (Kershaw et al., 2015;
Wittenberg et al., 2017). In addition, despite FCs being surrogate decision makers, health care
and public policy systematically ignores and sidelines them (NASEM, 2016). Treatment
decisions and health care planning occur without FCs. NASEM (2016) reports systemic barriers
include the industry’s focus on person-centered or patient-centered care that emphasizes
individual autonomy, privacy requirements of the Health Insurance Portability and
Accountability Act (HIPAA), lack of insurance payment rules to encourage HCPs to spend time
communicating with FCs, and a health insurance model oriented to individual coverage.
Ultimately, the culture and diversity of families, the timing of entry into taking on the FC role,
the duration of the role in relation to the overall life course of the individual FC, and transitions
in care demands over time all shape the various nature of the FC role (NASEM, 2016). The FC
role is a critical one needed in the U.S. health care system yet marginalized with limited
authority and power to make decisions. Even worse, FCs are vulnerable to the negative economic
and health effects of the role.
The Family Caregiving Crisis
The negative effects and complexities attached to the FC role combined with its growing
demand due to the increasing older population creates a predicament within the U.S. health care
industry. A body of evidence show family caregiving provided by a friend or family member
rather than a paid professional experience affects such as psychological distress, impaired health
habits, physiologic responses, psychiatric illness, physical illness, and even death (Pinquart &
Sorenson, 2003a, 2003b, 2007; Schulz & Sherwood, 2008; Vitaliano et al., 2003). Primary
stressors linked to this experience include the duration and type of care needed and the extent of
functional and cognitive disabilities of the patient. Secondary stressors also linked to this
15
experience include finances and family conflict (Schulz & Sherwood, 2008). In addition,
evidence demonstrates an association between caregiving and impaired health habits for those
that assist daily living needs of a patient, such as neglecting one own’s health care appointments
or eating a poor-quality diet (Burton et al., 2003). Evidently, taking on the role of an FC is
detrimental to one’s own physical and mental health.
On the other hand, positive effects of family caregiving also exist. According to Yu et
al.’s (2018) study, positive aspects of caregiving in dementia include a sense of personal
accomplishment and gratification, feelings of mutuality in the duo relationship, an increase in
family cohesion and functionality, and a sense of personal growth and purpose in life. In fact,
there is evidence reflecting reduced mortality and extended longevity for FCs overall compared
to non-caregivers, with reports of little to no caregiving related strain (Roth et al., 2015). FCs cite
positive aspects like caregiving makes them feel needed and good about themselves, instills
confidence, gives their lives meaning and purpose, enables learning, and builds supportive
relationships (NASEM, 2016; Tarlow et al., 2004). Therefore, the arguments exist where
supporting or helping others, which is what FCs do, may be beneficial to health.
Even with positive effects, the caregiving trajectory typically cascades negatively over
time. Following the increasing complexity and scope of responsibilities involved in serious
illnesses, the magnitude of health effects on an FC are affected by the intensity of caregiving and
the level of patient suffering (Schulz & Sherwood, 2008). A more recent systematic review by
Bom et al. (2019) confirmed evidence of the negative impact of caregiving on the mental and
physical health of FCs. The level of intensity and impact varied based on subgroups, with
females, married FCs, and FCs providing intensive care having more negative health effects.
Bom et al. determined positive impact findings came from self-assessed health, which may be a
16
result of bias from using the sick patient in their care as their reference point of comparison,
thereby increasing their own self-assessed health. Findings of negative health effects came up for
FCs when measuring an increase in drug intake and reported pain (Bom et al., 2019). The role of
caregiving has all the features of a chronic stress experience that creates physical and
psychological strain over extended periods of time, comes with high levels of unpredictability
and uncontrollability, has the major ability to create secondary stress in multiple life domains
such as work, friends, or family relationships, and frequently requires high levels of attentiveness
(Schulz & Sherwood, 2008). To make matters worse, FCs commonly report their needs for
information and community resources go unmet, which heavily affects racial and ethnic marginal
groups and those with low socioeconomic status (Bell et al., 2019). FCs labeled as the sandwich
generation experience role conflict and tension particularly as they try to provide care while also
fulfilling other roles as employees, spouses, parents, or even as a patient themselves (Bell et al.,
2019). To illustrate, the AARP & National Alliance for Caregiving (2020) reported across the
United States, 61% of FCs were working while they provided care and 24% of FCs were
providing care for more than one person.
The future forecast reflects an imbalance of supply and demand for the FC role. The
number of FCs needed to fulfill caregiving duties will likely increase, yet the number of FCs able
to support the need will decline (Bell et al., 2019; Roth et al., 2015). The large baby boomer
generation entering older adulthood and the concurrent push from hospitals and payer services to
shift care into the home and community, which creates more dependency on family caregiving, is
creating the family caregiving crisis (Bell et al., 2019; Kodate & Timonen, 2017). Naturally, this
imbalance of supply and demand will lead FCs to become the largest hidden workforce in health
care around the world (Kent et al., 2020). An example is during the global COVID-19 pandemic
17
(WHO, 2024), the need for family caregiving became more essential as the usual lifelines of
medical care and support became on hold (Kent et al., 2020). The need to provide care to
vulnerable adult patients and the shortage of FCs to take on the job is a growing challenge facing
the U.S. health care system.
The Triadic Relationship
Having FCs and families more involved with patient care leads to changes in health care
communication. With the growth of family caregiving, there will be more patient and HCP
encounters with a third person involved (Greene & Adelma, 2013). HCPs need skills in
managing communication with various individuals that include patients, FCs, their families,
along with other HCPs in the care team who are often involved in serious illness treatments.
Consequently, having a third party involved like an FC can potentially help reduce errors in
health care planning and support the growing immigrant population needing translation services
(Greene & Adelma, 2013). Health care communication should evolve to match the changing
needs of growing family involvement to prevent miscommunication and mistakes in care.
In the course of serious illness, support from family and friends is vital. Therefore,
multiparty medical encounters are common in those situations and practiced in EOL care as
family meetings to determine GOC as a group (Ethier et al., 2018; Greene & Adelma, 2013).
However, multiparty and triadic relationships in a health care setting where conflict is a
substantial and recurring problem adds complexity and increases the possibility of disagreement
(Francois et al., 2017). In addition, it is important to note communication between FCs, patients,
families, and HCPs has a strong influence on the whole family caregiving experience (Fletcher et
al., 2012). To be sure, this evolution in health care communication requires health care systems
to adjust and evolve. Changes to adapt include structuring outpatient clinic space to
18
accommodate more than one individual, creating ways to share health information that can be
easily accessible to multiparty care like secured web portals with laboratory data, and ultimately
including the FC in the medical encounter without sacrificing the autonomy of the patient
(Greene & Adelma, 2013). With more FCs involved in shared decision-making and care of the
patient, there will be more demand for triadic or multiparty communication, which will require
changes in health care system practices.
The Health Care Provider (HCP) Point of View
HCPs have their own perceptions of barriers to communication and challenges to having
GOC discussions. It is important to know GOC communication and ACP, particularly for
seriously ill patients and their FCs, are essential aspects of health care communication.
Foundationally, HCPs play a central role to inform patients, direct them to appropriate resources,
counsel them, and help them tailor care based on their prognosis and preferences (Krones et al.
2023). Despite recognizing the importance of GOC and communication, most HCPs do not
discuss GOC or prognosis with their critically hospitalized patients before they become acutely
ill (Ethier et al., 2018), not to mention FCs and families. HCPs also found it frequently difficult
to communicate advance care planning (ACP) with certain racial and ethnic groups (Ashana et
al., 2021). The racial and ethnic groups identified included 31.1% Black, Hispanic, Asian, and
Native American ethic groups (BIPOC), 24.3% non-native English speakers, 13.5% identifying
as Catholic, Orthodox Jewish, or Muslim, 12.2% with low health literacy, and 8.1% with low
income. In this same study, HCPs attributed barriers to mostly patients, then health systems, and
lastly to themselves. Similarly, Ethier et al. (2018) reported HCPs ranked patient and family
barriers as the key factor preventing GOC communication in outpatient settings. Consequently,
HCPs feel patients and families are causing communication issues.
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In the HCP’s viewpoint, multiple obstacles exist for patients and families that create
challenges. These patient and family barriers perceived by HCPs include the patient’s difficulty
accepting their own prognosis, the family members’ difficulty understanding the patient’s
prognosis, and the patient’s difficulty understanding their own prognosis. Additionally, Ashana
et al. (2021) identified three themes that define the difficulties HCPs have approaching GOC
communication and ACP. Firstly, HCPs have their own preconceived views of patient
preferences. Next, HCPs have their own narrow and specific definitions of a successful ACP.
Lastly, there is a lack of institutional resources. HCPs felt that while their own individual factors
and external factors are important barriers, they are less significant than the patient and family
factors that exist (Ethier et al., 2018). In other words, HCPs believe few barriers are related to
them, instead GOC and communication barriers are often patient and family related (Ethier et al.,
2018). Ultimately, HCPs add to the challenge with their varying perspectives and opinions that
patients, FCs, and families are the primary cause of communication problems, which further
indicates the need to improve health care communication.
Involvement of Family Caregivers
In conjunction with the role HCPs have in health care communication, the role FCs have
is also essential as it affects the quality of patient care and even patient outcomes. When FCs
take part in patient care, patients have better care experiences (Wieczorek et al., 2018;
Wittenberg et al., 2021). In fact, both patients and FCs experience better clinical outcomes and
hospital readmissions even reduce by 25% (Rodakowski et al., 2017). A meta-analysis conducted
between 1990 and 2016 by Rodakowski et al. using international research databases, such as the
National Library of Medicine’s MEDLINE, the Embase medical research database, and the
Cochrane Library, concluded that integrating caregivers as part of hospital discharge planning
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reduces the risk of hospital readmission. To be precise, the figures were 25% fewer readmissions
at 90 days and 24% fewer readmissions at 180 days when caregivers participated in the discharge
planning for older adults (Rodakowski et al., 2017). Although, in 2017, Laidsaar-Powell et al.
studied caregiver influence over decision-making, calling it the TRIO Framework, and
determined for the FC to be effectively involved, the FC needs the ability to communicate and
have health literacy skills, where they can find, understand, and use health information to support
the patient (Wittenberg et al., 2021). Therefore, FCs need to be able to communicate and
understand their patient’s circumstances to better support their patient’s needs.
FCs involved and engaged in their patient’s care can positively impact both their own and
their patient’s mental health, physical health, and quality of life. FCs feel involved when they are
supported, when they participate in health care planning and decision-making, and when they
understand the problem for the patient in order to manage the care needed (Borson et al., 2018;
Wittenberg et al., 2021). Some examples are when FCs need to manage medication or recognize
and react to changes in the patient’s health. However, FCs often face difficulties obtaining proper
information about the disease or have information overload, impeding their ability to understand
concepts and build adequate health literacy skills (Wittenberg et al., 2021). Not only do FCs deal
with communication barriers in complex triadic relationships (Francois et al., 2017), they also
manage barriers related to health care system complexity, lack of available resources, HCP time
constraints, and learning FC responsibilities with minimal preparation and training on disease
management and care instructions (Fields et al., 2018). Further difficulties arise when the FC and
patient do not collaborate with each other, which is particularly the case when an FC reluctantly
serves in the FC role when there are no other family members or options available (Wittenberg et
al., 2017). Communication difficulties lead to communication burden and negatively impacts the
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FC’s mental health risks, physical health risks, and quality of life (Rabow et al., 2004; Schulz &
Sherwood, 2008; Wittenberg et al., 2017, 2021). At length, FCs fill a critical need within health
care but face multiple communication barriers in an environment that has not yet fully evolved to
accommodate their primary role.
Evolution of Health Care Communication
Historically, varying health care standards and trends at different points in time
influenced the practice of medicine; from a traditional problem-oriented model to a goal-oriented
model that also evolved into patient-centered medicine. In a 1983 landmark study, McWhinney
planted a paradigm shift to switch the perspective of medicine from a problem-oriented model to
one focused on patient and physician relationships. McWhinney described how modern medicine
evolved with a lack of concern for relationships and continuity of care, with little interest in the
natural progression of a disease, with a decline of bedside teaching, with dwindling focus on
primary care and family medicine, and with higher values placed on publishing research over
teaching. These factors made the problem-oriented model unfit for the health needs of
individuals and changed perceptions of how to view disease.
Paternalism in Health Care
Eventually, medicine evolved to challenge existing paternalistic aspects within health
care. Subsequently, in 1991, Mold et al. first coined the term goal-oriented medical care, which
finally shifts health decision-making control away from the physician and addressed the patient’s
point of view. While Mold et al. recognized how the traditional problem-oriented model led to
advancements in the diagnosis and treatment of numerous medical problems, it did not address
other problems that exist, such as chronic incurable illnesses, disease prevention, and common
life events like pregnancy, well-childcare, and situations of death and dying. Additionally, the
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traditional model promoted a power imbalance between HCPs and patients. By focusing on
problem solving, health care interventions automatically happen as a default without ever
establishing real goals of therapy with the patient (Mold et al., 1991). Alternatively, Stewart et al.
(1995/2024) emphasized a holistic philosophy that encouraged HCPs to go beyond onedimensional, biomedical assessments of patients to transform clinical methodology to patientcentered medicine. Today, in 2024, the work of Stewart et al. continues to be a core tenet of
practice and teaching of medicine for multiple health professions since its first edition in 1995.
Stewart et al. emphasize two main principles for HCPs practicing patient-centered medicine.
One, to share power and hold equity in relationships, and two, to engage with empathy and
compassion. As society and the health care industry evolve, the importance of patient narratives
becomes increasingly important to hear for HCPs to better understand the life of the patient as
well as the disease.
Family Caregivers as Part of the Team
With more awareness of the importance of health care communication came the
realization of the importance of also communicating with the caregiver. In 2015, Vermeir et al.
conducted a meta-analysis of studies between 1985 and 2014 on health care communication that
concluded with a recommendation to have communication between caregivers featured in
medical training as an essential skill and quality characteristic. Evidence exists to reinforce the
positive effects of patient- and family-centered care interventions as a critical approach to quality
of health care (Park et al., 2018). Over the years, health care communication has evolved from
being problem focused, to considering GOC, to putting the patient priorities and needs above all,
to finally including caregivers as a critical part of achieving quality patient care and better
outcomes.
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A Diversifying Cultural Society
When analyzing communication in the health care industry, it is important not to
overlook the disparities that exist within health care communication. One example is how HCPs
tend to avoid certain discussions with select groups (Ashana et al., 2021). In 2017, Shen et al.
analyzed multiple studies between 1995 and 2016 to confirm disparities in patient-physician
communication contribute to racial disparities in health care. For instance, one finding concluded
Black patients consistently experienced poor communication, poor information-sharing, poor
participation as a patient and decision-making when compared to White patients (Shen et al.,
2017).
To further exacerbate the disparities that exist, the United States is also continuing to
become a more racially and ethnically pluralistic society (Vargas & Kemmelmeier, 2013; Vespa
et al., 2020; U.S. Census Bureau, 2023), with an aging population that will outnumber children
under the age of 18 by 2034 (Roman, 2021). The U.S. Census Bureau produced a population
projections report by Vespa et al. (2020) and population projections datasets (2023) that predicts
the racial composition of the U.S. population will change, with 32% of the population, which
equates to one in three Americans, will be a race other than White by 2060. In contrast, the group
expecting a reduction consist of the non-Hispanic White population. Furthermore, about 44
million people in the United States, which equates to one in seven people, are born in another
country. This number will rise to more than 69 million by 2060 (Vespa et al., 2020; U.S. Census
Bureau, 2023). These projections lead to the expectation there will be an explosion of
communication needs, specifically around language interpreter services and FC involvement, in
a health care industry that is already facing disparity issues around communication.
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Cultural Perspectives on Caregiving
Based on these population growth projections, ethnic minorities particularly will
encounter greater demand for family caregiving. This demand will place these groups at a higher
risk for adverse health effects (Pharr et al., 2014). The family caregiving experience is also
significantly different amongst cultural and ethnic groups, with major differences in the
categories of cultural embeddedness of caregiving, cultural determinants of caregiving
responsibilities, and cultural values and norms fundamentally driving decisions to provide care
(Pharr et al., 2014). To illustrate, Asian Americans, Hispanic Americans, and African Americans
describe caregiving as a normal thing to do without question, as it is culturally ingrained to do so
in the family and community. On the other hand, European Americans viewed caregiving
differently because they were not exposed to caregiving as the norm growing up (Pharr et al.,
2014). Cultural embeddedness will differ more so as the population diversifies and intermixes
cultures and traditions, further complicating the varying cultural needs an FC must manage.
Cultural Diversity and the Caregiving Experience
The changes and merging of cultures equate to a diverse set of beliefs, perspectives,
lifestyles, habits, and expectations of health and caregiving. With the older population increasing
in age and Americans increasingly diverse with multicultural backgrounds, cultural expectations
for FCs will also increase and create a substantial care demand around the world (Pan et al.,
2021). The universal family value or duty of filial piety is gradually more and more adopted in
multiple cultures and influences East and West societal perceptions on family caregiving (Ng &
Indran, 2021; Pan et al., 2021). According to Pan et al. (2021) there is a positive psychological
process that reduces feelings of FC burden with stronger filial piety beliefs. The likelihood is due
to FCs believing they are repaying their parents, achieving social morality, and gaining mastery
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or satisfaction that buffers their burden. When the duty of family caregiving is a virtuous act, it
cultivates positive perceptions (Ng & Indran, 2021). Cultural values from the concept of family
can shape whether the family caregiving experience is positively or negatively perceived.
Besides the concept of filial piety, ethnic and cultural backgrounds impact the family
caregiving experience. Cultural factors lead to different needs, burdens, challenges, and
outcomes for FCs (Tran et al., 2023). For example, Tran et al. (2023) found White, Hispanic, and
Asian American FCs have varying types of worries, provide different types of care, and face
unique challenges. Meanwhile, Asian American FCs had more stress about health-related
knowledge of their loved ones compared to White and Hispanic FCs, and White FCs navigated
government resources and support programs better than Hispanic and Asian American FCs.
Consequently, culture shapes the family caregiving experience.
Gender and Roles in Caregiving
Another factor significantly impacting the family caregiving experience is gender. The
gender of the FC, the patient’s own gender, the gender of the siblings and other potential FCs for
the patient influences the FC role (Grigoryeva, 2017). For instance, Grigoryeva revealed in cases
where the care recipient is a parent, sons provide less care if there is a sister available, while
sisters provide more care if they have brothers. In addition, females experience more caregiver
stress and caregiver burden. According to Schrank et al., female FCs regularly report higher
levels of stress and burden when compared to male FCs (2016). In addition, FCs are more
commonly seen as a female issue and responsibility due to societal and cultural demands (Lee &
Tang, 2015; Sharma et al., 2016; Schrank et al., 2016). Although gender differences affect the
family caregiving experience, Grigoryeva stated obligations and the kinship between the care
recipient and FC are the largest determinants of who provides more care. Even so, females
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consistently fulfill most FC roles (Grigoryeva, 2017). Females are largely tasked with the FC
responsibilities and at higher risk of stress and burden. Gender is one of the key cultural factors
affecting the family caregiving experience.
Learning more about what culture encompasses, it is evident it plays a major part in life
decisions and how an individual views death and dying. The global health industry is gradually
recognizing the profound influence of culture and ethnicity on health care decision-making,
particularly in EOL (Johnstone & Kanitsaki, 2009). Zegers and Auron (2020) defines culture as a
dynamic fusion of intricate social and personal components influenced by both individual and
environmental factors, which results from a mixture of interpretation, lived experiences, health
beliefs, reactions, and anticipation of the future. Culture therefore manifests differently for each
person and creates an important focus on time, context, and historical perspectives (Zegers &
Auron, 2020). Cross-cultural differences, particularly in ACP and EOL decision-making, are
becoming acknowledged with the understanding that people of underrepresented cultural and
linguistic backgrounds may have different preferences (Johnstone & Kanitsaki, 2009). For
instance, these groups are less trusting of health care policies and the health care system,
therefore are often in favor of family and group decision-making and may regard advance
directive (AD) forms as an intrusive legal mechanism. Typically, ACP may not be preferred or is
outright rejected, which leads to these groups choosing aggressive or proactive life-prolonging
treatments instead, regardless of the state of illness (Johnstone & Kanitsaki, 2009). To
summarize, different cultural beliefs and values lead to different ways of thinking and decisionmaking.
Furthermore, culture influences health in other ways. Customs, traditions, values, and
lifestyle expectations are aspects based on culture. In addition, a foundational aspect of culture is
27
language and communication (Zegers & Auron, 2022). Having recognition of the diversifying
world and awareness of the communications barriers FCs face in health care (Wittenberg et al.,
2021), cross-cultural communication is critical to improving the health and well-being of both
patients and FCs, along with improving healthy equity and decreasing health disparities in the
industry (Zegers & Auron, 2022). Similarly, HCPs themselves belong to members of their own
professional cultures with their own unique vocabularies and language, such as terminology from
epidemiology and medicine (CDC, 2022). With language and communication being part of the
foundation of an individual’s culture, HCPs need to tailor and strategize their communication to
the specific culture and language of the intended audience.
Patient-Centered Care (PCC)
With an understanding of the diverse aspects of culture, if patient-centered medicine is to
be successful, it should exist with the consideration of the patient’s individual culture. Health
care continues to advance with the current approach of patient-centered care (PCC) becoming a
standard goal, where a person’s individual values and preferences guide all aspects of their
health care plan (The American Geriatrics Society Expert Panel on Person-Centered Care, 2016).
There are two key concepts to delivering patient-centered care, which is ACP and shared
decision-making (Krones et al., 2023). These concepts interrelate. Shared decision-making is
used to describe ACP, which is a process where patients make future health decisions while
consulting with HCPs, family members, and others who are important to them (Singer et al.,
1996). However, it is easy to misrepresent complex, autonomous interventions like ACP or
shared decision-making (Krones et al., 2023). For instance, HCPs may see a treatment method
that has been successful with other HCPs and automatically think it is the ideal choice for the
patient, or HCPs believe patients do not want ACP or to make shared decisions (Krones et al.,
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2023). Even as recent as 2022, Taleghani et al. determined most HCPs had a paternalistic method
to deliver patient care and believed in promoting health and taking action to benefit patients.
Practicing PCC requires changing attitudes away from historical paternalistic views of
medicine, reviewing values, and altering behaviors at individual, professional, and organizational
levels (Taleghani et al., 2022). Attached to the concept of ethics and patient autonomy, PCC is
currently a core tenant in U.S. medical education and considered a key component of highquality care (Candib, 2002; Taleghani et al., 2022). While it is evident that PCC and culture are
interconnected, it is insufficient to address the growing need for the industry to standardize the
inclusion of FCs in health care communication.
Family-Centered Care (FCC)
In contrast to PCC, family-centered care (FCC) considers the role of FCs and the family
unit, which should become recognized as a standard of care option in the health care industry. As
the world progresses, it is clear families are integral in providing care and helping to meet the
needs individuals have during illness or disabilities (Kokorelias et al., 2019). Consequently, the
industry needs to move FCC into the forefront of health care to help increase recognition of the
care input needed from FCs, thereby improving the well-being of both patients and FCs
(Kokorelias et al., 2019).
PCC involves people that are relevant and important to the patient (Singer et al., 1996). In
similar fashion, FCC has parallels with involving the same relevant and important people, such
as HCPs and loved ones, to collaborate, plan, deliver, evaluate, and define who the family unit
encompasses (Institute for Patient- and Family-Centered Care, n.d.; Kokorelias et al., 2019). All
members of a patient’s care team should begin by asking and learning the family unit’s priorities,
needs, and concerns, as well as their capacity to offer care (Kokorelias et al., 2019). As identified
29
by Shen et al. (2017), when analyzing the effects of race and racial concordance in
communication, physician training is necessary to engage in higher quality communication with
patients from all diverse backgrounds. To achieve FCC, clinician practices require a change to
focus beyond patient-centeredness to consider the triadic relationship between the health care
team, the patient, and the family unit.
The model of FCC planning emphasizes the need for HCPs, FCs, and family members to
create a care plan together. Care delivery should begin when everyone agrees. To collaborate and
achieve FCC, HCPs would let go of their role as the single authority and remove the power
imbalance within the relationship, thereby challenging the concept of paternalism in medicine in
the same way as PCC (Kokorelias et al., 2019; Taleghani et al., 2022).
An FCC approach would build trust in the triadic relationship, capture the support needs
of FCs, increase education and resources to better prepare for family caregiving, consider family
context and cultural values, and improve communication and information exchange, which
addresses the major factors causing conflict (Greene & Adelman, 2013; Kokorelias et al., 2019).
In addition, FCC directly combats the cross-cultural problem of Western society’s ethical belief
on individual autonomy, avoidance of aggressive care at EOL, and disclosure of diagnosis,
where ethnic groups may view the concept as foreign and in direct opposition to their familybased values (Candib, 2002). Simply put, FCC is necessary as an alternate health care model to
acknowledge FCs as part of the team and to balance the multicultural perspectives that exist
within the diverse population in the United States.
Driving the Health Care Vortex into the Future
True patient-centeredness requires flexibility to adjust how to approach health care,
whether it is as a team, with the caregiver and family, or as the clinician driving treatment
30
decisions. People are complex and as such they need various considerations when it comes to
planning for their health, many of which are cultural and non-medical in nature (Sturmberg,
2010; Zegers & Auron, 2022). Many factors influence health in a person’s life and the key is to
give people the power and deliver care based on their individual needs (Sturmberg, 2010). Crosscultural communication and sharing different perspectives allow the triadic team, which includes
the patient, the FC, and the HCPs, to learn and gain knowledge about each other in the context of
dealing with the patient’s health needs (Greene & Adelman, 2013; Sturmberg, 2010; Zegers &
Auron, 2022). The reality is no individual will ever have all the knowledge necessary to
recognize and understand the interconnections across the vast and diverse health care vortex
(Sturmberg, 2010). The current mainstream health concept where individualism dominates and
insistence on patient autonomy without consideration of cultural values and other factors is in
fact itself paternalistic (Candib, 2002; Johnstone & Kanitsaki, 2009).
The definition of health is unique to each individual. The hidden health care workforce of
FCs should be involved in shared decision-making. Decisions directly impacting an FC’s own
time and commitment should naturally involve them too (Bell et al., 2019). An ideal and
responsive health care system should consider the needs of each patient and FC, while
seamlessly evolving to integrate their various needs into the trajectory of care (Pharr et al., 2014;
Sturmberg, 2010). In summary, a diverse buffet of health care approaches fostered by high
quality communication and cultural humility should be the standard offering in the United States
health care system, where FCs are recognized as an essential client and partner with their own
individual needs that interconnect with the patient’s needs. To further understand and frame the
study on how FCs manage health care barriers, a conceptual framework outlines the structure of
the study in the next section.
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Conceptual Framework
The conceptual framework for this study integrates literature, the cultural humility
theory, and my experience to explore the stories, identities, and lived experiences of FCs through
a narrative inquiry approach (Clandinin & Connelly, 1991). A comprehensive lens of cultural
humility will guide the problem where there exists a shortage of FCs who are unseen in the
health care system. Factors that analyze the FC’s worldview, history, political climate, personal
beliefs and values, individual situation, and physician environment will be central concepts to
establish identity, experience, resilience, and adaptation. These factors create the foundation of
how an individual perceives situations and makes decisions. The expectation is personal
narratives reflect and shape these concepts. Overall, this conceptual framework serves as a
roadmap for the narrative inquiry, laying out the research process and ensuring this study
grounds itself in theoretical considerations surrounding cultural humility.
Cultural Humility Theory
Cultural humility is a concept particularly essential for an increasingly diverse society
like the United States. The notion of diversity itself is broad and includes cultural differences that
range from variations in norms and beliefs among countries, communities, groups, and
individuals to independent diversity of thought (Foronda, 2020). Overlapping and intersecting
cultural factors within the cultural humility framework can help to inform cultural experiences
and perspectives.
In 1998, Tervalon and Murray-Garcia were the first to propose the term cultural humility
as a comparison to cultural competence in the context of multicultural physician training.
Cultural competence, a term originally authored by Sue et al. (1992), was becoming a prominent
and convenient catchphrase in clinical practice at the time. This term referred to having
32
multicultural awareness, knowledge, and skills about individuals and groups, which can apply to
specific standards, policies, practices, and attitudes (Gottlieb, 2020; Zegers & Auron, 2022). In
essence, cultural competence is a skill and knowledge base that can be taught and gained
(Stubbe, 2020).
Though, cultural competence is criticized for its emphasis on knowing and becoming
competent in understanding another culture as if it was an endpoint to reach, and it only
magnified the supremacist concept of a dominant culture familiarizing itself with a marginalized
culture (Gottlieb, 2020; Tervalon & Murray-Garcia, 1998). Instead of approaching with cultural
competence, engaging in an active and lifelong commitment with others and oneself describes
the different approach of cultural humility (Tervalon & Murray-Garcia, 1998). To rephrase,
cultural humility is the awareness and attitude you have no special importance that makes one
better than others from the standpoint of culture (Gottlieb, 2020). Acknowledging the vital role
cultural humility plays in a diverse society the health care industry supports, the concept of
cultural humility developed into a nursing theory as a recommended guide in health care
practice.
Concept from The Culture Care Theory
In 2020, Foronda developed the theory of cultural humility as a guide on how HCPs and
people can appreciate diversity, differences, and apply a cultural humility framework to reach a
positive outcome or goal. The formal definition of cultural humility in Foronda’s work is a
process of critical self-reflection and lifelong learning in acknowledgement of diversity and
power imbalance among people by being open, self-aware, egoless, flexible, respectful, and
supportive. Prior to the theory of cultural humility, there was a similar framework called the
theory of culture care diversity and universality, also known as culture care theory, developed by
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Leininger in 1988. The culture care theory served as the foundation for Foronda’s theory of
cultural humility.
In the culture care theory, Leininger integrated ideas involving multiple factors and
explanations for distinct decisions and actions, which became incorporated into the specific
process for Foronda’s cultural humility theory (Foronda, 2020). However, Foronda defined a
broader and more general approach, without including “caring” as an attribute that is part of
Leininger’s approach. Both are nursing theories developed to improve nursing care practice with
active consideration of the various dimensions of culture and perspectives within patient care
(Foronda, 2020; Leininger, 1988). Although Foronda’s approach addresses diversity and cultural
conflict within health care, it is primarily a starting point for individuals that requires the move
from theory to application before its effectiveness is determined.
Rainbow Model of Cultural Humility
Individuals that want to apply the theory through its fundamental concepts can reference
a visual of a rainbow and the process flowing to key decisions and actions. To enact cultural
humility, the individual frame of mind should begin with a flexible mindset, a dedication to
focus on others as well as oneself, and recognizing all individuals hold equal value (Foronda,
2020). A rainbow is used to describe and visually support the concept of varying worldviews of
diversity, historical standards, political climate, personal beliefs, environments, and situational
conditions, where they overlap and combine just like the colorful rays of a rainbow to present an
overall context that make up the primary perspective of an individual, group, or community
(Foronda, 2020). Upon blending these rays and perspectives, a power imbalance can emerge, and
differences arise to form cultural conflict, which then continues to an intersection that can lead to
34
three primary decisions or actions (Foronda, 2020). Using the rainbow model of cultural
humility, the study will incorporate factors specific to the problem of practice within each layer.
For the purpose of this study, the individual is designated as the FC. The rainbow
describes the varying influences in the FC’s life that led to their role and how they formulate
their opinions and decisions, the triangle represents the dynamic of perspectives and power
between HCPs, the patient, family members, and the FC, all of which steers the FC to cultural
conflict and three primary categories of decisions and outcomes that follow. Using this model as
part of the conceptual framework, each of these layers affect one another. The next sections
break down and describe each layer in the context of the study. Figure 1 provides a visual of the
rainbow model of cultural humility as it pertains to this study.
35
Figure 1
Rainbow Model of the Cultural Humility Theory
Note. This model shows the process of cultural humility theory in the context of this study, with
the rainbow depicting the range of factors that influence the FC identity, culture, and
perspectives leading to an emergence of power imbalances particularly in the health care
industry and triadic relationships, which creates potential cultural conflict and the paths to
decisions, actions, and outcomes.
36
World View and Context
Any person, whether the FC, patient, or a HCP can be the individual within this
theoretical framework. However, in this case it begins with the FC viewed through the cultural
humility lens. To start, there are five assumptions that come with the theory of cultural humility
(Foronda, 2020). Firstly, all humans are diverse from each other but also part of a community.
Secondly, humans are intrinsically altruistic. Thirdly, all humans have equal values. Next,
cultural conflict is normal and expected in life. Lastly, all humans are lifelong learners (Foronda,
2020). The individual has taken on an unpaid, FC identity due to their world view, their family or
community history, the political structure that might exist in their family dynamic, their personal
values, their relationship with the patient, their present situation, and their real-world
environment related to economy, logistics, and finances. On the other end, from the perspective
of an HCP providing care service, practicing cultural humility requires engaging in a method of
realistic, ongoing self-evaluation of biases and stereotypes that encourages HCPs to assess how
their own attitudes prevent them from learning about or understanding their customers – the
patients, families, and FCs (Gottlieb, 2020). Cultural humility recognizes power differentials that
exist, which challenge HCPs to consider their own privilege and ethnocentrism in the profession
as interferences to truly partnering with the patient and family (Fish-borne et al., 2015; Gottlieb,
2020). Following this framework addresses the imperative need to understand how identities
intersect, formed by the melding rainbow of factors.
Cultural Conflict
The rainbow flows directly into the triangle, or triadic relationship, seen in the current
problem of practice. Perspectives and differences in the authority to address the situation then
lead to potential discordant perspectives and power imbalances amongst the parties involved,
37
which end up with cultural conflict. A part of life that is normal and expected is facing cultural
conflicts, particularly with the vast range of diverse perspectives that exists (Foronda, 2020).
Awareness of this component of cultural conflict becomes a meaningful foundation to create
cross-cultural communication for cross-cultural interactions, which involves intentional efforts to
reframe messages in specific tones and context to be inclusive and respectful (Zegers & Auron,
2022). For example, in a situation regarding equity, an HCP adding social components like
appropriate and respectful sexual orientation to communication can enhance the effectiveness of
health care delivery for an underserved and vulnerable population, regardless of whether the
HCP’s personal worldview and perspectives are different or the same (Zegers & Auron, 2022).
Decision and Actions
One of the research questions in the study examines cultural conflict by exploring the
challenges and barriers FCs experience in their roles. Exploration of cultural conflicts creates
opportunity to analyze how each layer of the cultural humility framework influences the FC to
three primary categories of decisions and outcomes. This analysis addresses the other research
question of how cultural factors impact FC experiences in health care. When cultural conflict
occurs, there are three decisions and actions that become obvious (Foronda, 2020). One choice is
to apply cultural humility, depicted in Figure 1 with a cloud drawn to represent the flexibility
involved in this choice, which leads to a positive outcome (Foronda, 2020). Having a flexible
mindset is key to enacting cultural humility (Foronda, 2020). In Figure 1, the dashed line also
symbolizes the view that all human values are equal (Foronda, 2020). In contrast, the other two
choices involve a rigid mindset focusing on the needs or opinions of oneself, which leads to
negative outcomes (Foronda, 2020). In the case of cultural ambivalence, the choice is to neglect
and ignore the factors and perspectives that are different. Finally, in the case of cultural
38
destruction, the decision is to oppress or discriminate against the different individual, group, or
community (Foronda, 2020).
Conclusion
Not only do FCs experience a wide range of challenges in the U.S. health care system,
but they are also increasingly in demand within the diverse and complex society we live in. In
their role, FCs often take on major responsibilities regardless of their choice with little to no
preparation or training for the job. Consequently, this job also comes with an increase in physical
health, mental health, and mortality risks to themselves. Due to the growing demand for this job,
paired with a lack of support, sometimes lack of choice, and lack of information given to FCs,
the United States is facing a family caregiving crisis. With more FCs involved in patient care, the
situation is further complicated with more chances of conflict, further driving the need to
carefully handle the complex connections among patients, FCs, and HCPs. These conflicts are
often related to communication, language, culture, and differing perspectives. Yet, HCPs also
have their own opposing views on the type of barriers they face within this problem of practice.
HCPs believe patient and family complications are the source of difficulties for HCPs to improve
communication, establish care goals, and a shared health plan. Meanwhile, the conflict and
burden of the FC role is increasing health risks for both FCs and patients, negatively impacting
the care experience and illness trajectory.
Traditional practices and education in medicine contributed to the subtle paternalism seen
in the health care industry even today. Although, progress has been ongoing as care models have
changed over time from being problem-oriented, to goal-oriented, to person-centered, and may
eventually evolve to also include a family-centered approach. With the U.S. population growing
more diverse each year, common Western or European American beliefs on revering
39
independent care and individual autonomy preferences may become less popular to make way
for the family-based care concepts frequently ingrained in the cultural norms of African
Americans, Hispanic Americans, and Asian Americans. Using a cultural humility lens to frame
this problem of practice will help to address these gaps, lead a pathway to reach positive
outcomes, and magnify the unseen experiences, unheard stories, and unmet needs of FCs, the
invisible workforce in the U.S. health care vortex.
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Chapter Three: Methodology
The purpose of this study is to explore FCs’ cultural experiences and their challenges in
the health care industry. This chapter describes the methodology and research design that will
explore the participants lived experiences, the research questions guiding the study, the selection
criteria for participant interviews to help inform the study, and the measures to evaluate and
interpret the data. The chapter concludes by addressing the credibility and trustworthiness,
ethical considerations, and limitations and delimitations of the study.
Research Questions
The research questions that guide this study include:
1. What do FCs describe as the challenges they experience in their role?
2. How do cultural factors impact FC experiences?
Overview of Design
This study used a narrative inquiry as the research methodology and design. The goal is
to explore the experiences of FCs in understanding how culture, communication, and support
impact their role. A narrative inquiry approach, pioneered by Clandinin and Connelly in 1991,
using qualitative interviews aligns with this goal to gain insight and understanding of the
problem of practice through the focus on experience. Lindsay and Schwind (2016) pointed out
how experience matters and describe narrative inquiries as a collaboration between a researcher
and participants arising from a personal-professional dilemma. In addition, narrative inquiry is
used in the nursing research, education, and health care practice space as a way to enhance, not
only quality of care, but quality of experience (Lindsay & Schwind, 2016), which positions it
within the same setting as this study within the health care industry surrounding FCs of
individuals that are seriously ill. Essentially, capturing the lived experiences of FCs through a
41
narrative inquiry and qualitative interviews potentially reveals their knowledge and the
construction of their identities.
Research Setting
FCs for seriously ill adult patients treated in the U.S. health care system are the focus of
the study. Patients who are seriously ill require visits to and from hospitals or clinics, as well as
assistance in their homes. For the purpose of this field study, the FC lived with their care
recipient during the time they provided caregiving. In addition, the FC experiences explored in
the study occurred within the U.S. health care system. FCs are specifically included as the focus
of the study because their role is directly involved in the research questions.
The Researcher
In terms of my positionality, I will begin by acknowledging the potential bias that exists
due to my current role as a program director within a hospital system. My occupation allows me
access to witnesses and some of the parties involved in this problem, such as nurse practitioners,
palliative care specialists, and clinical social workers. These groups are among some of the HCPs
that directly provide care to a seriously ill patient and their FC. My job exposes me to how poor
communication and lack of cultural humility create a ripple effect on the care experience for all
parties involved. Consequently, having firsthand experiences of family members as FCs to my
now deceased, terminally ill family members also make me a witness to this problem. I
recognize the impact of psychosocial effects I had through these experiences. As a result, I have
potential bias where I may amplify the issue due to my close relationship with the problem of
practice.
On the other hand, factors exist that still make me an outsider to this problem. I am not a
seriously ill patient nor an FC, so I lack experience and full understanding of these roles. I am
42
also not an HCP myself with patient care experience. Being a first-generation, Chinese
American, middle-class female who is bilingual, with English as my second language, I own a
hybrid identity. I do not classify with all traditional Chinese culture, nor do I fully embrace
Western societal culture. Therefore, I have my own hybrid, individualized culture. Nevertheless,
I remain heavily influenced by a Buddhist, filial pious upbringing that influences my views on
EOL, reincarnation, and patient autonomy. These are among the factors that define my
intersectional identity that may influence my assumptions and biases in this study.
To mitigate method bias, I used clear and concise language, formulated appropriate
questions with the help of others to review for bias, and created distinct instructions and
procedures to increase the probability participants in the research can fully understand the
questions during interviews (Podsakoff et al., 2012). These methods helped ensure my questions
match the capabilities of the participants to prevent receiving information they may not truly
know. I exercised caution when asking about the motives behind decisions, the effects of
situational factors on behaviors, and other aspects pertaining to cognitive processes that are
unlikely attended to by the participant (Podsakoff et al., 2012). Furthermore, I took steps to
define and clarify terms comprehensively to avoid ambiguity, along with providing clear
examples.
Data Sources
The primary data source for the study originated from individuals who were FCs for a
seriously ill or disabled adult patient that received treatment in the U.S. health care system.
Potential participants who met the criteria received information about the study and an invitation
to take part in a one-on-one virtual or in-person interview. This study targeted 12 participants
43
with each one participating in one in-depth interview during the study period. Interviews are the
primary data source for this narrative qualitative study.
Method: Interviews
With narrative research, Creswell and Creswell (2018) describe the aim is to study the
meaning of the lived experiences of individuals to share stories about their experiences. The
objective was to use interviews with FCs to capture their stories. These stories live within larger
cultural, social, and institutional narratives, and provide meaning to the lived experiences
(Clandinin & Cain, 2008). Interview questions incorporated the cultural humility lens in hopes of
exploring power imbalances, self-reflection, systems, and perspectives. Focusing the questions
and narratives around cultural humility will help identify self-understanding and interpersonal
sensitivity, as well as cultivate the intracultural variations and multifaceted components of each
individual FC (Stubbe, 2020). Specifically, this narrative approach is helpful to provide a voice
to those who are unseen or unheard like FCs. Therefore, the primary method of inquiry is the use
of interviews.
Participants
Female individuals who have family caregiving roles are the participants for this study.
For the purpose of the study, FCs are female individuals who assist a seriously ill adult patient
they have a significant personal or familial relationship with. They are unpaid for their services
in this role and their health care experiences took place in the United States. At the same time,
participants had been working while caregiving or had given up work to take on caregiving. The
serious illness definition used in this study is a condition that carries a substantial risk of
mortality and either negatively impacts a person’s daily function or quality of life, or excessively
burdens their caregiver (Kelley & Bollens-Lund, 2018). Specific examples of the definition of
44
their support services include assistance with basic needs like meals, shelter, transportation, or
personal care; social and emotional support; coordination of health care appointments and related
needs; support in health care decision-making; management of medications; aid in medical or
nursing tasks in the home; function as advocate and surrogate for health, legal and financial
matters. Because the average hours of assistance each week can fluctuate and vary over time,
there was no minimum amount of time the participant needed to spend as an FC for this study.
However, all participants lived with their care recipient during the time they provided care. To
explore culturally diverse backgrounds through a cultural humility lens, participants were first
generation or second generation American, meaning either they or one of their parents are born
outside of the United States. The aim of the study was to reach 12 participants with each of them
undergoing in-depth, one-on-one interviews.
Network and snowball sampling (Merriam & Tisdell, 2016) was the recruitment approach
for this study. As a qualitative research study, leveraging social networks helped identify this
hidden population of FCs to understand their cultural and support experiences in health care.
Recruiting through social networks garnered an overwhelming number of inquiries and referrals.
In fact, several participants were turned away because they did not meet the full list of criteria for
the study, or they were not from within my personal network. Purposeful selection was necessary
to prioritize participants from my personal network because trust was gained more easily, which
led to deeper conversations. Recruitment of participants came from conversations with
individuals familiar to me or through my personal social media posts (Appendix B). The
snowballing method applied, as I asked initial participants for recommendations of other
potential participants who met the criteria. Potential participants within my personal network or
from referrals received communication via phone, text, or email describing the purpose of the
45
study, the participant criteria, details on how the study is conducted, what the expectations are,
how their contributions are used in the study, and information about the ethical and
confidentiality considerations of the study. This participant selection process helped to
understand the experiences and challenges these FCs had and the cultural factors that have
impacted them through their lived experiences.
Instrumentation
The researcher is the key instrument in qualitative research (Creswell & Creswell, 2018).
The interview protocol was to have in-depth interviews with approximately 15 questions
outlined. Questions were primarily open-ended and categorized under concepts relevant to the
cultural humility lens. The interview approach was semi-structured to provide a fixed set of
questions for interviews while still being flexible. This approach allowed for specific data from
all participants, which increased the reliability of the protocol (Merriam & Tisdell, 2016). At the
same time, the semi-structured interview allowed for a deeper dive into the individual
experiences of their distinct FC roles and contributed to increased validity in the responses
received (Maxwell, 2013; Merriam & Tisdell, 2016).
With this approach, the interviews fostered deep and emotional conversations that lasted
longer than the anticipated duration. The process required the researcher to gradually peel back
layers of each participant’s story, moving past facades to reach the raw and deeply emotional
core of their experiences. Immersing in such vulnerability and uncovering these intense emotions
across multiple interviews led to empathy fatigue for the researcher, who had to continuously
absorb and navigate these feelings throughout the study. It became evident participants rarely
talked about this subject matter, as several of them shared it was in fact their first time discussing
their FC experience in detail. Consequently, this interview structure helped create a
46
comprehensive picture of the FC’s lived experiences relating to the problem and research
questions.
Data Collection Procedures
Interviews took place between March through May 2024. Each interview was estimated
to take 1 to 2 hours either via Zoom or in-person in a location agreed upon with the participant.
Eleven out of the 12 interviews lasted longer than 1 hour and some surpassed 2 hours.
Translation assistance was offered if needed during the interviews and the sharing of photos and
other memorabilia occurred. Transcribing, analyzing data and recordings, and coding themes
followed the interviews. Feeling questions, knowledge questions, experience questions, values
questions, background questions, and demographic questions elicited both information and
opinions from the participant. The objective was to utilize interview questions that were openended to yield descriptive data, stories, and phenomenon (Merriam & Tisdell, 2016). Prior to
beginning, permission to record was obtained and additional clarification was provided to
consider the sensitive nature and potentially traumatic experiences the participants may have had
to recount. Specific details included the encouragement to take pauses and breaks anytime they
needed and the assurance that any of the questions asked were solely voluntary and not required.
After each interview concluded, each participant received a $25 Amazon gift card as a thank you
gesture for their time and participation in the study.
Data Analysis
Data analysis follows interviews to make sense of the data (Merriam & Tisdell, 2016).
After each interview, transcriptions were completed using the field notes and the Zoom or audio
recording. In addition, contextual and non-verbal cues from the participants were added into the
completed transcriptions. With the interviews transcribed, segmenting the data with focus on the
47
cultural humility framework and the research questions took place. Segmenting the data into a
matrix of themes helped to organize it categorically and chronologically, leading to the ability to
code the data.
The data received continual coding and repeated reviews. Major ideas surfaced between
the recordings and field notes. Coding by themes allowed for parts of the data to get isolated,
grouped, regrouped, or reassembled in different configurations that revealed trends and findings
(Creswell & Creswell, 2018). Computer software programs, such as Microsoft Excel and
Microsoft Word, were used for qualitative data analysis to detect, code, and annotate findings.
Due to the nature of the narrative interviews, manual coding using Microsoft Excel was
performed instead of using the automation method through Atlast.ti. To help ensure qualitative
findings represented diverse perspectives, themes were grouped in various ways and reviewed as
expected codes, surprising codes, and unusual codes. Furthermore, visual figures were drawn up
to help display the themes and relationships between data categories.
As a narrative inquiry intended to study experiences related to the research questions,
segments were extracted from different stories for a categorical analysis (Merriam & Tisdell,
2016). This phase further refined the extractions into thematic groups to describe the findings for
each research question. Given the importance of understanding cultural factors that influence the
FC’s experience, valuable quotes from participants are included to portray the essence and
meaning in their narratives. The following chapters will include a summary of the overall
findings that addresses the research questions, a comparison of the findings to the literature,
considerations of personal views to check for bias, clarification on the limitations of the study,
and future research.
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Credibility and Trustworthiness
According to Merriam and Tisdell (2016), validity and reliability in qualitative research
are associated with conducting research in an ethical manner. Ethical practices are essential to
establishing trustworthiness, which relies on the researcher. Strategies promoted by Merriam and
Tisdell to attain validity and reliability in this research study would be to triangulate with themes,
apply peer debrief by asking peers to review the interview questions and study process, spend
prolonged time in the field and with participants as much as possible, have an audit trail, provide
comprehensive descriptions to contextualize the study, member check with participants after
creating the report to obtain feedback, and clarify the bias I bring to the study.
Ethics
This research study serves the interests of FCs, patients, their families, and HCPs. The
benefits from the study may include findings to help create better communication, more support
for FCs, encourage cultural humility, increase awareness of cross-cultural needs to reduce
difficulties for patients, FCs, and HCPs, and improve quality of care and patient satisfaction
evaluations for institutions. On the other hand, HCPs and institutions may find results of this
study depict negative or harmful viewpoints on their accountability, priorities, and clinic
operations. To ensure validity and reliability of the study, methods are conducted ethically with
careful attention to the research design and the way in which data are collected, analyzed,
interpreted, and findings are presented (Merriam & Tisdell, 2016). As Merriam and Tisdell
(2016) explained, these ethical practices are essential to establish trustworthiness of the study.
To foster trustworthiness, the study implemented and followed ethical practices. Privacy
for participants was preserved and data captured was confidential. Zoom recordings were
automatically stored in the Zoom cloud and then deleted after transcriptions were completed.
49
This step also applied to audio recordings on recording devices. The perspectives of FCs were
the primary audience in this study, which explored their lived experiences as an invisible, unpaid
workforce in the U.S. health care system. As required by University of Southern California’s
(USC) Institutional Review Board (IRB), participation was voluntary and informed consent was
required prior to participation. Identifiers, names of participants, and the real name of the
institutions in their experiences are not disclosed. Implications identified include the assumption
that FCs experience challenges within the U.S. health care system.
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Chapter Four: Findings
The purpose of this study was to explore the cultural experiences of FCs from their
perspectives as well as better understand the types of challenges they experience. This study used
a cultural humility framework to examine the challenges FCs in the United States face and to
identify the cultural factors that impact the FC’s experience in complex health care situations. A
narrative inquiry was the method used to explore participant responses. Though much research
has been done on caregiving burdens and barriers, this study aimed at adding to the limited
insight on the experiences of FCs through a cultural lens. This qualitative study explored the
perspectives and lived experiences of female FCs. The two research questions that guided the
research findings were as follows:
1. What do FCs describe as the challenges they experience in their role?
2. How do cultural factors impact FC experiences?
This chapter begins with a description of the study participants followed by a brief profile
of each study participant. With a narrative inquiry, it is important to understand the individual
backgrounds to gain better insight and understanding into how it impacts their world view and
experience as a FC. The findings pertaining to each of the two research questions will then
follow. Lastly, a summary of the findings will conclude the chapter.
Participants
As described in Chapter Three, study participants came from referrals within my social
network. I purposefully selected 12 women who met the criteria as a first or second generation
American and unpaid FC within the United States who worked or gave up work and lived with
their adult care recipient. All participants consented to the confidential interview that ranged
between 1 to 2 hours. One participant requested to be interviewed in person and 11 participants
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were interviewed via Zoom. Table 1, sorted in order of age from youngest to oldest, indicates the
participant names (pseudonyms), cultural identity, marital status, number of children, family
position, religious affiliation if any, and the patient or care recipient. All but one of the
participants had their family caregiving experience in Southern California within Los Angeles
County. The one participant had their family caregiving experience in the California Bay Area
within Alameda County. The majority of participants are second generation American (75%),
married (67%), do not have children (67%), and worked while caregiving (83%). Cultural
identities were self-identified by participants using ethnic groups that include Asian (58%),
Hispanic or Latino (25%), Black (8%), and Middle Eastern (8%). Participants held various
positions in the family from being the youngest, middle, oldest, or only child. Additionally, as
Table 1 depicts, all participants cared for a family member that was biologically related or
related by marriage. For additional details, a brief narrative of each participant is in Appendix C.
52
Table 1
Self-Identified Demographic Data of Participants
Name
(Pseudonym)
Age Cultural
Identity
Marital
Status
Children Family
Position
Religious
Affiliation
Patient/Care
Recipient
Elizabeth 28 Black Single 0 Middle
child
Christian Mother
Lucy 30 Latina
Mexican
Single 0 Youngest
child
None Mother
Heather 33 Afghan
American
Married 0 Youngest
child
None Paternal
Grandmother
Katherine 38 Asian
American
Married 1 Oldest
child
None but
raised
Christian
and Taoist
Father
Wendy 40 Asian Married 0 Only child None Mother-in-law
Hannah 41 Chinese Married 0 Oldest
child
None but
raised
Buddhist
Father
Nancy 42 Filipino
American
Married 0 Only child None but
raised
Catholic
Mother
June 46 Hispanic
Mexican
American
Single 0 Only child None but is
spiritual
and raised
Catholic
and
Christian
Mother and
Maternal
Grandmother
Juliet 46 Chinese
American
Married 2 Oldest
child
Christian
and
Buddhist
Mother-in-law
Michelle 49 Japanese Single 0 Oldest
child
None but
raised
Buddhist
Mother
Drew 50 Japanese
American
Married 2 Youngest
child
None Mother
Grace 56 Hispanic Married 2 Oldest
child
Catholic Male Cousin
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Findings Related to Research Question One
The first research question sought to understand the challenges FCs describe they
experience when caring for a seriously ill adult. The conceptual framework guided the study
through cultural factors that define the participants’ world views and perspectives. This section
shares how female FCs, ranging in different ages, from diverse cultural and multicultural
backgrounds, experience various perceived challenges. Collectively, four key themes emerged
for Research Question One. The themes are physical and emotional challenges, health care
management challenges, interpersonal and communication challenges, and financial and
logistical challenges. Figure 2 provides an abstract of the themes that emerged as the challenges
FCs described they experienced.
Figure 2
Research Question One: Result of Themes Identifying FC Challenges
Physical and
Emotional
Challenges
Health Care
Management
Challenges
Interpersonal
and
Communication
Challenges
Financial and
Logistical
Challenges
Family
Caregiving
Vortex
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Physical and Emotional Challenges
The first theme identified as challenges for FCs are related to physical and emotional
experiences. Physical and emotional challenges contribute to the understanding of how the FC
participants experience and cope with the demands placed upon them. The types of physical
challenges FC participants experienced include the need for them to provide constant
supervision, their disregard for their own health, physical exhaustion, physician strain,
responsibility burden that impacted their wellness, sacrifices, sleepless nights, and workload
demands. The types of emotional challenges FC participants experienced include burnout,
compassion fatigue, emotional exhaustion, emotional strain, guilt, stress, loneliness, and
understanding limitations.
Physical Challenges
Each of the 12 participants cared for a seriously ill loved one that required constant
supervision. The continuous oversight and vigilance take a physical and mental toll on the FC.
With the constant need for supervision, there were also recurring patterns of disregard for the
FC’s self-needs due to cultural expectations. All 12 participants shared instances where they
made sacrifices, in some cases, multiple sacrifices.
One sacrifice was ignoring their own needs due to lack of time and the weight of their
ongoing responsibilities. Juliet shared she recently experienced her own health scares but during
the initial days of caregiving for her mother-in-law, she declared, “you don't even have time to
get sick!” June’s mother, who began as the FC for her grandmother, suffered serious health
emergencies that prompted June to become the FC for both her mother and grandmother. After
55
becoming the FC, June explained “I felt the neglect, you're just too tired after you're done caring
for folks. You're too tired to take care of yourself.”
Other sacrifices include lifestyle decisions and losing freedom. June revealed, “What I
wasn't prepared for was the loss of my carefree lifestyle. … your whole life was changed.” She
also pointed out how she not only cared for her mother and grandmother, but she also took care
of their pets too. Drew lost sleep, explaining her mother was on oxygen and needed overnight
assistance to go to the bathroom. She described, “I was sleeping next to her for a good three
months. … it was basically like having a baby all over again, but an adult baby.” Drew, a fulltime FC who was hoping to return to work, continued to share how her father-in-law is the next
family member that will need an FC. Therefore, she was preparing to take on that role as well
because she now has the experience. “So as far as their care and who it would fall upon? Me
probably,” she mused.
Many FC tasks required physical strength to perform with less sleep, which caused
physical strain. Toilet and bathing routines or helping with the patient’s lack of mobility were
common examples participants shared. Elizabeth, Wendy, and Juliet described needing physical
help with showers and bathroom visits due to lack of mobility. Wendy recounted, “We have to
lift her from the bed and usually we needed two people to take her to the bathroom and it takes a
long time for her to spend in the bathroom.” June described her day-to-day duties, “She had lots
of acute confusion, lots of manic episodes, incontinence and just really, really physically heavy
caregiving.” June went on to share, “It's just exhausting. Aside from having to wipe someone
after they poop because they can't do it on their own and bathing. … she needs standby
assistance all the time.” Sleepless nights were also common. Drew was not the only one who
slept next to her mother, Nancy and Juliet also slept by their loved one to assist with needs
56
overnight. The terms, “exhausting” or “tiring,” came up frequently to describe participants’
workload.
Emotional Challenges
All 12 participants mentioned having feelings of exhaustion while they were an FC
regardless of whether they had an overall positive or negative experience. Due to the type of
physical and time sensitive tasks FCs undertook, the stories illustrated consistent exposures to
various emotional stressors as the FC. Wendy, who cared for her mother-in-law until she died,
said she was “mentally exhausted from the experience.” For Lucy, Nancy, Katherine, June, and
Juliet, there was a tremendous amount of emotional strain amongst the family due to the
imbalance of role responsibilities. Juliet explained how the family dynamic “adds a lot of stress
and is one of the things that breaks families.” June mentioned, “there are those strained family
dynamics, where it's better off if they're not involved.” FCs consistently recounted how they
endured emotional strain and compassion fatigue.
All 12 participants expressed care and fondness for their care recipient but also described
the experience as tiring. A range of factors created stress for the participants, from taxing and
long medical visits to burden of dealing with the disease symptoms, to stress of finding another
job. Changing jobs to accommodate her FC job was what Nancy had to do. She was teaching
summer school and needed an extra week off to prepare for the upcoming workload while
managing her mother’s schedule, but her employer’s response was, “No, if you can't do it this
first week, I'm gonna give it to somebody else… and I was like, I need to work… I just said,
‘Sorry mom, I gotta work.’” After this experience, Nancy became explicit about her need for a
flexible schedule, “It's the first thing I say, just to be completely transparent. My mom's disabled,
I handle her caretaking.”
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Guilt was also a major emotion that came up for the participants. Nancy and Michelle
both believed they were guilted into taking on the FC role. “We're guilted into these positions of
caretaking,” Nancy explained. She also felt guilty for not getting involved with her mother’s
health sooner, which could have averted her blindness and prevented her medical condition from
deteriorating. Michelle felt guilty for her inability to figure out proper treatment plans for her
mother and Heather felt guilty after her grandmother’s death for not spending more time
together. Heather emotionally revealed her experience, “I really struggled because I was so close
with her, and I took care of her. … I went through some guilt, definitely, coupled with the grief.
There was a lot of guilt.” She contemplated, “What could I have done more? I wish I could have
done more.”
Along with guilt, there were other persistent feelings. June was gripped with shame for
her thoughts of wanting death for her grandmother to prevent further pain and decline. She was
also resentful towards her grandmother because she did not expect her mother to be the one with
the critical health emergency first. The day after her interview, June sent an email describing
lingering thoughts she had that were important to mention. She wrote:
Having feelings of resentment towards my grandmother while my mom was struggling in
the hospital. … after my grandmother had the stroke and started home hospice care I
would pray that she would go peacefully in her sleep vs live more days suffering. I felt
like I was constantly bracing for her to pass away. … the above feelings were so hard to
deal with. I felt sad, guilty, even mean, like a bad person for having such thoughts.
Katherine struggled with self-condemnation and uncertainty from the health decisions she made
prior to her father’s death. While sharing her experience, Katherine reflected on the weight of
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decision-making as the FC and health care proxy, which left her with nagging doubts. She
described it as a “haunting moment, because it's almost like I was playing with life.”
Additionally, struggling to establish boundaries for themselves, understanding their own
limitations, and asking for help were common revelations shared by the participants. When
interviewed on what she would do differently, June answered, “Maybe try to look into other
options for more help earlier. Be more open to help taking better care of myself as we were
going through this.” Michelle reflected similarly, “I would go back to having a little more help…
vocalizing a little more to my brother to find a way to get him over here… maybe he would have
come out to help in the last few days.”
Subsequently, participants like June and Michelle eventually recognized the need to
obtain outside assistance with caregiving to cover more complex medical needs and alleviate
their own burden. Michelle recalled, “There were a couple of times when I did hit breaking
points, and I think that's when I kicked in the extra caregiver visits to help me because I needed
to just have that different scenery. Just getting out.” June eventually hired caregivers to alternate
help, while she covered nights. However, seven other participants shared their belief on cultural
duty and how family caregiving needed to come from within the family. Katherine expressed her
father “sacrificed a lot for the family because he had to provide and so I had to show him that I
appreciate him… I was the first one… to take care of him.” Heather explained it “made the most
sense for me being there to be the one to take on those responsibilities. And I was happy to
because I myself was like, ‘well, I’m living here.’” Juliet described the importance of family,
filial piety, and explained, “I don't think of my mother-in-law as a burden because I'm more than
happy to take care of her. … it's an honor to still have this time… it's just part of our life and our
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story,” Juliet reiterated the sentiment again, “It's not a burden for me to take care of my family
this way.”
In situations where the care recipient was the FC’s own parent, there were also concerns
about what others would think if they were not the FC. For them, it was a culturally bound duty.
Elizabeth stated, “She's my mother, I just have to help her.” Nancy, who delayed having children
to provide care for her mother, explained how being the FC “was expected, I was worried about
what others would think.” Though, after learning through her experiences, she also advises, “One
must understand your own limitations.” Nancy continued and emphasized, “Loved ones can guilt
us into this role, but ultimately, it's what's best for everybody, so that the person being taken care
of gets the best care. It’s unselfish. It’s centered around them. … that's ultimately the goal.”
In general, family caregiving places copious amounts of stress on the relationships
between family members. On top of that, the lack of a balanced responsibility distribution causes
relational strain and further isolates the FC. The overwhelming dependency on an FC can lead to
feelings of separation and burnout. Each of the 12 participants experienced social isolation due to
how demanding their roles were. Although majority of participants felt well supported by their
families and shared some of the caregiving responsibilities, they also had feelings of loneliness.
Participants recurringly used the words, “lonely” or “alone” to describe their overall experience.
“I felt like I was standing alone,” Lucy reflected. Having uneven responsibilities among families
caused participants to have feelings of isolation and unfairness, which led to family strains.
Health Care Management Challenges
The second theme established reflects challenges to managing health care for the patient.
Health care management challenges include barriers to patient care and barriers to knowledge
and resources. Patient care barriers include getting the patient to accept care, advocacy burdens,
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racial discrimination, decision-making, treatment planning, navigation of the health care and
insurance system, diet, inadequate care support, coordination of medical appointments, and
housekeeping tasks. Knowledge and resource barriers include the lack of information and
training, the learning curve involved, medical knowledge required by the FC, understanding
health issues and implications, the need for FCs to get more support, and having limited help.
Patient Care Challenges
The FC encounters multiple challenges while managing health care for a patient. Lucy,
Wendy, Hannah, Nancy, and Juliet had difficulty in persuading their patient to agree to certain
medical treatments or assistance, particularly with walking, using the toilet, and showering.
Lucy, who was 19 at the time, described managing and translating for her mother’s care,
“Medication was a huge one. If I didn't explain to her what was going on, she wouldn't take it…
she would just dismiss it… but a lot of times it was necessary.” It was an obstacle for Lucy, but
she understood the health care system was hard for her mother, “A lot of times my mom hated
going to her visits because I think it made her feel kind of dismissed.” In Wendy’s experience,
she had to support someone who did not like help. She shared, “My mother-in-law didn't let us
do much for her. She is very independent. … only allowed us to help the last half of the year
when she could not get out of bed.” Juliet’s mother-in-law was once a basketball player on the
Laos national team. Hence, Juliet understood her struggle to accept help, “She's such an athletic
person and incredible woman that I think having something like cancer and all of these
debilitating diseases makes it that much harder for her to accept her current state.”
Another example of patient care barriers is when Nancy and Lucy spoke about the
cultural norms that considered it taboo to discuss mental health, illness, or death, which made it
difficult to have open conversations and plan together. Lucy reflected on her upbringing, “Health
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care was never spoken about growing up. It was actually something very unfamiliar to me… it
was definitely I would say taboo.” Nancy dealt with her mother’s mental health issues after she
lost her vision but getting her to seek care was a battle. Nancy explained that “mental health is a
taboo for the elderly. That seems like a piece of tradition or common belief in the family and in
the culture.”
On the other hand, each of the participants had positive interactions with HCPs. Though,
there were occasional difficulties experienced. Racial discrimination was revealed when
Elizabeth shared how her family felt treated in an unfair way because they were Black. When
sharing her experience with HCPs, she said, “Sometimes they feel like they're treated unfairly
because of identity… I see other people who don’t have to wait to be treated but for us it’s quite
a long process.” Racial challenges that exist lead to patient care challenges.
Another negative experience around patient care was when Grace dealt with HCPs that
would not speak directly to her patient because of his inability to speak. Yet, he could understand
them perfectly. She had to go out of her way to ensure HCPs incorporated her patient into the
discussion. Grace described, “Some providers were understandable… but some providers looked
at him as unimportant and we’d have to advocate for him.” Grace explained, “He might not
know how to speak but he can hear everything… understands everything, whether it's in Spanish
or in English.” On the other hand, participants who were translators or health care proxies for
their patients mostly felt included by HCPs in treatment planning.
The complexities and emotional strain from health care decision-making also added to
the stress and burden on FCs. Juliet described her family as being “heavily reliant” on her to do
the research so they could all make an informed decision. She said, “I think it was a lot of
pressure… what I was proposing was life changing, right?” Katherine took over full
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responsibility for health decisions for her father. She stated, “I did all the research, I was in
contact with the doctors. He trusted me to make the decision for him.” During the interview, she
also expressed doubts on the clinical choices she made in his EOL care, “I was playing with life,
you know, but at the end of the day, what my doctor had told me is that no matter what he would
have passed.” Drew described the family dynamics for her mother, “I have power of attorney on
her medical, legal, financial. … but I was consulting him [brother] too and keeping him updated
on everything that was going on. … yes, they [HCPs] consulted me.” In fact, Drew’s mother had
multiple emergencies where the hospital needed immediate decisions and when Drew was
unreachable, they went forward with making emergency decisions for her mother without her
consent. It was an added stress for her to be available all hours of the day while her mother was
in the hospital.
After decisions were made, the management of treatment plans for the patient followed.
FCs found it challenging, especially without having previous knowledge of the health care
system or the illnesses with which they were dealing. Drew recalled, “they give you a pamphlet,
I guess you can call that customer service but there was really little to no training.” Every
participant besides June and Heather, who both worked in patient care, confirmed they had no
training or preparation to take on the FC tasks they were handed. Nancy portrayed the challenge
of managing care plans, insurance, pension, and finances with no preparation nor prior
knowledge, “It was very sudden, and it was like, ‘alright, let's go.’ … the internet is the best tool.
… I can't believe I figured that out.”
At times, there was inadequate support from HCPs, which was the case for June who
navigated her mother’s and grandmother’s care during the COVID-19 pandemic at a severely
understaffed hospital. June recounted her experience, “The staff was undertrained. When I tried
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to give recommendations, I was met with just [sic] very defensive. It was actually really sad.”
June added this occurred during an uptick of the COVID-19 outbreak. “After my mom got
discharged, then we got a notice that the hospital filed for bankruptcy,” she recollected. Drew
described her experience learning how to use equipment, including an “oxygen tank, tubing, and
a compressor,” that was delivered to her home for her mother’s treatment without her knowing.
She shared how she got by, “A lot of Googling and talking to my uncle that’s a family practice
doctor. There wasn’t really much in terms of how you would use this apparatus.” Michelle
recounted, “It was probably written somewhere in the discharge papers, to set the oxygen tank at
these numbers.”
Advocating and communicating coordination of care, managing appointments, following
medical instructions, and making informed decisions were among the many patient care tasks
performed by each of the 12 participants. For instance, Drew said she was “constantly taking
blood pressure” and Heather recounted how she “took her grandmother to doctor appointments,
properly placed morning and night medications, got medical supplies, [and] contacted the
insurances.” There were typically many HCPs involved and the FC would assist to coordinate
the care process, especially if they were the health care proxy or functioning as the translator.
The process also challenged FCs to maneuver through a complex health care system and rigid
insurance policies. In fact, after knowing what she knows now, Drew wondered if there are
caregiving classes that exist. She threw out an idea, “Or even a YouTube… like, ‘hey, take a
look at this YouTube and how you would care for somebody that's immobilized for example.’ …
I didn't know what questions to ask at the time.”
The logistical and timing to schedule, attend, and manage medical appointments for a
patient were demanding for the FCs. In addition, each of the FCs prepared their care recipients’
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diet and strict meal regimens while keeping up with housekeeping tasks to maintain a clean and
safe living environment. For example, Drew’s mother needed a “low salt diet because of her
blood pressure.” Katherine described her routine, “I had to wake up every morning at six to start
cooking for my dad. I would do all the cooking and cleaning and then go to work.” Juliet shared
similarly about her mother-in-law, “She lost everything including her whole stomach. … she has
to have very soluble stuff.” When asked to describe their day-to-day duties as the FC, each of the
participants listed a wide range of tasks, specific to the type of illness their care recipient had. A
common scenario among the participants is how Hannah illustrated her father’s care, “I
scheduled his appointments, drove him around, made sure that he had food… bathed him, helped
him to get dressed… I still manage medication for him. I have to double check it with the
doctor.” Multi-tasking to manage logistics, schedules, and diets add to the long list of burdens
and challenges FCs have to manage.
Knowledge and Resource Challenges
Out of the 12 participants, 10 participants felt unprepared and untrained prior to
becoming an FC. June was the only FC trained professionally in EOL patient care when she took
on the FC role, which she explained helped her manage the process even though becoming the
FC was sudden and unexpected. Most of the FCs learned on their own through “observations” of
HCPs, “asking questions, researching” on their own, and joining peer support groups. For
instance, Elizabeth shared how she tried to learn by watching the nurses at the hospital, “How
she’s being handled throughout the day… when it's time to bathe, how she had been carried,
when it’s time to eat. So, from observing what the nurses were doing, I was able to provide that.”
There was a learning process involved for them to acquire the necessary skills to perform
medical tasks foreign to them, like operating the oxygen machine or taking vitals. The FC
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participants found themselves learning on the job and practicing through trial and error, which
was overwhelming and placed their situations at risk. Even with a task like bathing, basic
training can make a major difference in care. Wendy’s experience is a prime example of the
consequence of having no training, “I remember one time she broke her arm. I helped her to take
the shower, but I didn't get trained right. We just did it. I just did it. No training provided.”
Furthermore, FCs need to comprehend health conditions so they can recognize implications and
ongoing needs as the illnesses progress. Michelle learned this through her experience when she
did not know how to set the oxygen tank numbers or understood the repercussions around her
mother’s illnesses, “The oxygen tank… we were flying… during one trip. She passed out on the
plane. Luckily, there were two nurses on the plane, so they helped.” It was on this trip they
discovered Michelle’s mother had developed another illness and complication.
What is evident is the lack of knowledge and training leads to the likelihood of being
unaware of options, alternatives, and opportunities. Understanding the illnesses and the
techniques to coordinate care around those illnesses would support FCs to have more comfort
and confidence in their tasks. This concept was something Katherine understood, leading her to
research rigorously and self-learn. Katherine recounted, “I just joined a ton of different cancer
groups online and on Facebook, which helped. You're able to make new friends, chat, and learn
from others.” She continued to depict the outcome she felt, “I wasn't prepared but at the same
time, I felt like I had all these tools.”
All the participants explained how essential it was to get support from others, whether
from family or the health care team. The participants who received family support and financial
support described the overall experience as positive. Although Michelle did not get support from
her brother who lived farther away, she still felt lucky she had her community and explained, “I
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had friends who were very supportive. … the support came to us at times, not without being
asked.” She went on to say with relief, “Thankfully, it wasn't so long term because Medicare did
cover the hospice. I looked at it later when the statements came in, that's how much it costs. And
it was wild.” Grace described herself as blessed because she received “a lot of support” from her
employer, husband, and family. Juliet overwhelmingly felt she had “amazing support” from her
family, where they all rotated schedules to care for her mother-in-law and her own three
children. Wendy emphasized that her “ whole family is very filial pious… and they cooked too.”
She felt she had an overall “smooth experience” with “lots of support.”
On the contrary, participants who wanted family support but did not receive it had mixed
emotions during their interviews. June recollected, “It was a fight to advocate for things.”
Katherine admitted, “I was angry at my sisters, but they couldn't be angry with me because I did
all the work and I sacrificed.” Lucy said she was “ostracized” by her family and her overall
experience felt “powerful in a negative and positive way.” For her, the pain from the experience
drives her now to become a future physician. Nancy’s experience matched many of the other
participants’ descriptions, “The experience was very lonely, especially since I was the first of my
friends that went through this experience.”
External help from professional caregivers was limited for most participants due to either
financial strain, personal preferences, or cultural norms. For example, insurance companies did
not always cover the cost of caregiving for the patient. “Financially, we couldn’t figure it out
because care is expensive,” Nancy expressed. Lucy had to work while being the FC due to
financial reasons. She explained her mother was previously the family provider and said, “When
this happened, obviously, she couldn't be a provider anymore.” What is evident is FCs take on
the job because external professional help is not available or inadequate for varying reasons.
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Interpersonal and Communication Challenges
The third theme focuses on the difficulties faced in the realm of interactions and
communication among FCs, patients, family members, and HCPs. The challenges under this
theme highlight a specific aspect of interpersonal dynamics that can complicate effective
caregiving and health care management. Interpersonal barriers include relationship related
challenges. These relationship challenges encompass issues around caregiving teamwork,
responsibility distribution, and harmony in decision-making. In addition, complicated feelings
related to the role reversal of adult children paying back to their parents as FCs are present.
Moreover, prioritizing the patient, making sacrifices, and overburdening FCs were also factors
that came up as relationship challenges in the interviews. On the other hand, communication
challenges involve miscommunication, issues on speaking up, language barriers, cultural
differences, and isolation.
Relationship Challenges
Interpersonal relationships play a major part in the FC’s experience and cause many
challenges. Creating a sense of teamwork and collaboration among co-caregivers or family
members leads to better outcomes. The tasks involved are overwhelming for one FC and sharing
the workload effectively as a team alleviated some of the FC burden. For instance, Juliet required
a system where she could rely on other family members to help with her children while she cared
for her mother-in-law. “Like one person takes care of mom, while one person takes care of the
kids. Then switch, then switch,” she said. Elizabeth was able to cope through workouts at the
gym with the help of her sister and father stepping in. “When I get angry, I just go to the gym
and work out. My mental health at that moment is then quite good, and I'm back to normal.”
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In contrast, those without caregiving teamwork to support them, including Katherine and
Lucy, ended up with feelings of resentment and isolation. Related to this is the concept of
achieving responsibility distribution, which can cause resentment and divide in the family. For
Katherine, she and her husband had hurt feelings. “They did not jump in to help, so that caused a
lot of resentment and fights between my sisters and I. … he [husband] always felt like my sisters
should have put in more work,” Katherine shared. Lucy said, “I wasn’t allowed to go anywhere
on weekends… and the school thing was a major conflict. … they [siblings] were angry that I
was taking those 4 hours a week for class, and they hated it.” June noticed family members
disappear once they knew things were “being taken care of.” She wondered if things could have
been different, “I can’t help but think if my grandmother was rich, I'd have everybody up in my
house trying to help.”
In addition, there exists the role reversal of adult children paying their parents back as the
FC, which comes with emotional impact and relational adjustments for both the adult child and
parent. Wendy shared how uncomfortable her mother-in-law was when her children had to
shower her, “My mother-in-law, she didn’t like us to help her.” Hannah also struggled getting
her father to cooperate when she had to shower him. She had to persuade him, “He was very
embarrassed. I'm like, look, it is what it is until you get better. I don't want to do this either, so
let's get better.”
Reaching decision harmony and finding consensus is another challenge FCs managed.
Lucy felt uninvolved in her mother’s decisions about her health, “I want to be more involved in
the decision-making and want to be asked questions.” Furthermore, Lucy and her siblings
disagreed on responsibilities, “It angered them… they built resentment because they hated that
my mom was, instead of thinking of herself, she was thinking of me, and so I became like a
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target… my mom would be upset.” The participants all recounted experiences communicating
health care updates and decisions back to their family members. However, most did not
experience this type of decision-making challenge because they were the lead for health care
decisions, which helped to avoid conflicts.
Prioritization of the seriously ill patient was a consistent expectation each FC had for
themselves. Yet, balancing the patient’s needs and the FC’s own well-being was “hard,” as
described by most of the participants. An important point noted was how the FC participants had
to make greater personal sacrifices compared to other family members, amplifying the emotional
strain. For ten of the participants, their experiences mirrored similarly in how they prioritized the
patient before their own needs and preferences, leading to self-sacrifices and at times selfneglect.
Various scenarios demonstrate how participants made sacrifices to consider their patient
first. Examples include how Elizabeth gave up her teaching career, “I was a teacher, and my
work in school wasn't quite possible for me to also be a caregiver to her.” Elizabeth also became
willing to take on the FC role indefinitely, even if that was not the original plan, “In 2 years, I
just made up my mind, there’s no reason why we should have to employ a caregiver for her. I’m
still around so I’m still going to be the caregiver.” Drew remodeled her home and began sleeping
beside her mother to manage overnight bathroom needs, “We remodeled our downstairs master
bedroom to house her. We brought in an adjustable bed, redid the bathroom with a senior walk-in
tub, a toilet, more storage, things like that.” Lucy put her education on pause and missed
experiencing college as a young adult for her mother, “There was a lot of pressure on me to act a
certain way. I had to rush home on weekends, and I wasn't allowed to go anywhere.” Katherine
shared how her marriage and relationship were not prioritized above her father’s needs, “It took
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time away from him [husband], but I appreciate him for letting me do all that for my dad.” Juliet
had declared she did not “even have time to be sick,” and proceeded to ignore her own health
needs, which developed into a major issue for her afterwards. Grace’s care for her disabled
cousin over the past 30 years was so integrated into her life to the extent that her children, who
have seen her as his FC their whole lives, now help with his caregiving as well. Grace said, “My
children came with me for my cousin… now my son goes over to help caregive.” These
examples illustrate the various sacrifices elaborated by participants.
Communication Challenges
There was an abundance of communication issues the FC participants experienced.
General problems with conveying information and needs between FCs, patients, and HCPs easily
occurred. Cultural differences created difficulties in how to communicate with one another. For
instance, eight of the participants shared examples of different cultural communication styles
they had to manage. Nancy expressed, “My mom didn’t know how to communicate what she
needed from me.” Another instance were cultural norms that considered it taboo to discuss
mental health, illness, or death, which made it difficult to have open conversations and create
care plans together. Nancy and Lucy described this experience in their interviews. “Mental
health is a taboo for the elderly,” said Nancy. “It is so taboo to even talk about those things,”
shared Lucy.
Indirect communication was a common style of communication, particularly in Asian
cultures. For example, in Michelle’s and Nancy’s circumstances, there were untold, indirect
expectations for them to stay at home until marriage. For Katherine, the expectation to become
the FC went unsaid and came in the form of stories and examples of what other relatives did
before, thereby setting the precedent. “I was always told a story. … my oldest uncle… he came
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first. … it’s always the oldest sibling’s duties to then be the next in line to take over duties left in
the family.”
Cultural differences also led to difficulties for FCs to find the words to speak up for their
needs. In looking back on their experience and what they might have done differently, Lucy,
Michelle, and June shared sentiments on how they could have been more vocal about asking for
help. “More support from the family, I was the absorber of it all, and it reflects my relationship
with my older siblings now,” Lucy shared. “Being more vocal about asking for help from
family… but it’s different for everybody because there are those strained family dynamics,” said
June. “I would’ve taken advantage of having a caregiver if not every day, at least one additional
day. … I wish I told my brother more,” Michelle contemplated.
Language barriers, particularly for non-English speaking patients in the United States,
created challenges for the FC. The task to translate medical terminology often became the FC’s
duty. While June, Juliet, and Heather had health care backgrounds, none of the participants were
certified or trained as a medical translator. Yet all 12 participants assisted with varying forms of
medical translation as the FC. Lucy recalled the experience she had first learning of her mother’s
terminal illness. The medical information her mother relayed to her did not make sense to her at
the time. She went on to share, “I remember thinking… I was so confused, but then the more that
I dug, I realized that it was because she didn’t have a translator.” Heather recollected, “There
was a language barrier… I had to translate… and show my aunt how to provide the care.”
Language barriers added to communication problems for the patient and the FC, eventually
leading to other challenges such as the lack of information or difficulty accessing support.
There was a recurring pattern of participants not wanting to feel burdensome to others
and focusing on feelings of humility and gratitude. June wondered how the health care industry
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can make it better. She said, “We’re all at risk here. … having caregivers is better for everyone’s
health, but how do we preserve that person who was the caregiver?” Juliet explained how their
character and substance were tested through this experience, “It’s a very humbling experience,
very honorable time spent. You have the option to embrace these challenges and come out with
your head held high.” Heather shared, “Working with elderly has been the most rewarding
experience I had in my life. I think about it often.” Grace explained how fulfilling being an FC
has been for her. It taught her to be more “humble, grateful, and appreciative of her health.” She
believes, “The more you do for others, the more it comes back to you.” These participants cared
for seriously ill patients and practicing gratitude helped them focus on the positive aspects of
their role.
Financial and Logistical Challenges
FCs face various financial and logistical challenges that significantly impact their ability
to provide effective care. Financial challenges arise from the economic burdens associated with
family caregiving. Logistical challenges involve the complexities of coordinating various health
care services, ensuring access to necessary resources, and managing the transportation and
scheduling of medical appointments. The fourth theme combines these two overarching
challenges and encompasses the daily responsibilities of caregiving. FCs regularly juggle tasks,
access care for their patients, coordinate services, manage schedules, manage logistics, deal with
employment issues, face financial burden, and at times plan home modifications for patient
safety.
Financial Challenges
The concept of family caregiving designates a family member or close friend to become
the primary FC. This process can easily lead to financial strain for the FC, who may have had to
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make work sacrifices to accommodate this role. The FC role creates financial burden due to
economic strain caused by caregiving expenses, medical bills, supplies, and lost income. Issues
can also include costs of necessary home modifications and reduced work hours or employment
opportunities. For instance, Nancy shared the added responsibility she had dealing with her
mother’s finances, “I pay all the monthly bills,” she explained. Another example of added
financial costs is from home remodifications. When Drew remodeled their home to
accommodate her mother, she said, “It was for the purpose of her eventually moving in, so we
were preparing for that.” On top of these added costs, Drew also lost income because she could
not return to work after she became the FC. Financial concerns impacted Michelle’s experience
as well. She had to figure it out, "Okay, how much do nursing homes cost? What are the options?
What do other patients do?" Being an FC impacts the FC’s job status, performance, work
attendance, and career progression.
FCs face the threat of earning less financially from reduced work hours since they often
require more time for caregiving. Nancy shared a crucial aspect FCs must consider, “How
willing is a workplace to understand what's going on? … for my workplace to support me in that
capacity is truly a blessing. … if my workplace wasn't supportive, it would have been really
bad.” In fact, Nancy’s previous job would not accommodate her caregiving schedule and she had
to change her position. In contrast, Katherine and many of the other participants had financial
support and felt fortunate. “We were lucky because we were financially stable,” said Katherine.
Ultimately, financial support for the FC was essential.
Out of the 12 participants, each one had financial support provided either by their own
job or by another member of the family, which allowed them to take on the FC role. Ten
participants financially supported themselves by working while being an FC and two participants
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had financial support from family. FCs fulfilling multiple roles required effective juggling skills,
which added to the stress and workload. At the thought of lacking finances if her mother had not
had a pension available, Nancy expressed, “It would have added another layer of stress that is
already stressful.” Furthermore, the more an FC takes on, the more it can reduce the time and
quality of care they provide for their care recipient. Therefore, even with varying levels of
financial support, the financial obstacles FCs must overcome have a substantial impact on their
capacity to deliver quality care.
Logistical Challenges
Taking on the FC role requires extensive coordination of health care services, ensuring
access to resources for the patient, managing schedules, and major alternations to existing
lifestyles. The daily caregiving tasks for an FC requires great commitment. It creates challenges
for FCs to balance multiple caregiving tasks and their other responsibilities simultaneously. Time
management is essential to address the challenge of efficiently allocating time to daily caregiving
duties, personal needs, and other obligations.
Eleven of the 12 participants, excluding Wendy who had her sister-in-law manage
medical visits, shared the same responsibility to manage logistics for their care recipient. They
were planning and transporting their patients to medical appointments, which demanded
consistent flexibility in their own schedule. However, having a flexible schedule was not always
possible for the FCs. In Drew’s case, she could not return to work as planned once she became
the FC, and Nancy had to find another job to better accommodate her schedule. Michelle and
Katherine lucked out their experience occurred during the COVID-19 pandemic, which gave
them flexibility they would not otherwise have had. “It’s a pandemic thing. … I think I just
lucked out that I could still work,” Michelle said about her job as a teacher, which would not
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have had flexibility otherwise. Katherine reflected, “So I kind of thank COVID for that because
it allowed me to have more time. … not many people are going to the dentist during COVID.
Everything just kind of worked out.”
Access to care support and resources are essential for a seriously ill patient and
instrumental in creating an overall positive experience for the FC. FCs, along with planning for
their patient’s care at home, had to ensure additional resources and support were provided to the
patient. For Hannah, she had to see to it her father had regular access to physical therapy and a
rehabilitation center to relearn how to speak and obtain mobility again. “I was ecstatic when I
learned about the rehab center. … my dad was transferred upstairs to do rehab.” For Grace, she
described how difficult it was to watch her mother-in-law go through tremendous pain near her
EOL. Access to increasing pain medications was a way for them to help her cope. “At the end,
she could not eat. She was in a lot of pain. We got the doctor to give her medicine, but it didn't
help a lot,” recounted Wendy. Ensuring access and coordinating services between hospitals, inhome care, hospice care, and other specialty services, along with the FC’s own caregiving
service is complex. The process required organized and synchronized planning by the FC.
An additional factor that impacted access to health care and support was the COVID-19
global pandemic. For some, the pandemic exacerbated existing challenges by introducing
restrictions that limited physical access to support networks and health care services, thereby
increasing the burden on FCs. For June, her experience occurred “during the COVID outbreak
right before Christmas, so the hospital was short staffed.” June also experienced her mother in a
nursing home during that time, which she described as, “Really difficult… way too many people,
way too many patients… it's impossible to assign as many patients as each one had.” These
restrictions prevented FCs access to being present at hospitals with patients, reduced family
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visitations, and negatively impacted the ability to get help and resources. “You can't get to
everybody when they need you,” June said when referring to HCPs. Michelle recollected times
during COVID-19 where she “could not be with her mother during COVID” in the hospitals.
This restriction was a negative experience for her because she explained the care was better
when she was “present.”
On the contrary, the pandemic restrictions also allowed FCs the ability to simultaneously
work from home and provide care. Michelle and Katherine both had this positive experience due
to COVID-19. Nancy also benefited from the pandemic. “I think we were one of those few
families that really thrived in the pandemic because I had to work from home,” Nancy explained,
which allowed her and her husband more time with her mother and mother-in-law, who both
needed care. The ability to work remote while caregiving contributed to FCs having financial
and employer support.
Findings Related to Research Question Two
Research Question Two sought to understand how cultural factors impact FC
experiences. This section shares how influences from cultural and multicultural backgrounds
define the FC’s world view, identities, beliefs and values, priorities, and how they formulate their
decisions. The interpersonal sensitive nature of participant experiences helped to explore selfreflection, self-understanding, and the power imbalances within families and the health care
industry. Altogether, there were four themes impacted by seven cultural factors that emerged for
this research question. The four themes are the perception of caregiving, caregiving practices,
family structure and dynamics, and access to support. Cultural factors and intracultural variations
influenced these themes, which formed the FC’s experience. Figure 3 provides a synopsis of the
themes and cultural factors revealed for Research Question Two.
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Figure 3
Research Question Two: Result of Themes Identifying Impacts caused by Cultural Factors
Perception of Caregiving
The way each participant perceived the role of caregiving directly affected the way they
assessed their overall experience. Cultural beliefs, values, and expectations significantly shaped
the participants’ individual perceptions and thereby impacting their experiences, particularly in
the context of familial relationships. The participant’s self-identification and cultural background
reflected the adaptations they made for their multicultural identities. These two cultural factors
informed the participants’ perceptions of being an FC, which had a substantial impact on how
they regard their overall experience.
Perception of Caregiving
Beliefs, values, and expectations
Access to Support
Language needs
Family Structure and Dynamics
Social gender roles and stereotypes
Birth order, family position, and kinship
Caregiving Practices
Cultural traditions
Cultural
Impact
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Beliefs, values, and expectations rooted in culture influenced how participants perceived
their role and duties. In interviews with seven participants influenced by an Asian cultural
upbringing, filial pious beliefs were described and upheld as a supreme virtue. This virtue was
required from these participants and scrutinized as if one was committing a major offense if
unfulfilled. For instance, Juliet described filial piety and said, “it's our duty, we even took care of
her before she was sick, giving her full support.” She went on to affirm, “My mother-in-law is
not a burden.” Nancy revealed in her interview that her godmother could have taken care of her
mother as the FC too, but she admitted, “I didn't want to let her down. I felt like she would have
judged. She was my mom… and I was worried what people would think because I think people
did expect me to be this person.” Despite the type of cultural background each participant had,
they were all first- or second-generation Americans. Each one of them shared similar sentiments
about their beliefs and expectations to become the FC. For instance, Heather, who was raised on
Afghan traditions, insisted, “Elderly, you care for them. It's not needed to be asked, it's an
expectation.” Elizabeth, who identified as Black and grew up in California but had a mother
from South Africa, also felt the expectation to take care of her parent without question. She
emphasized, “She's my mother, I just have to help her.”
FCs often felt a sense of duty to care for their elders due to cultural expectations. This
expectation fulfills the belief that children are to reciprocate the care they received (Ng & Indran,
2021; Tran et al., 2023). This belief can lead to feelings of guilt or failure when FCs do not meet
these expectations. However, this same belief in filial piety also led to feelings of positivity in
the FC’s overall experience and a sense of fulfillment of responsibility, which can possibly
lessen the FC burden (Pan et al., 2021). Wendy described her overall experience as smooth, even
if it was painful at the EOL and losing her mother-in-law. “I really appreciated her… My
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mother-in-law was always so positive… she was the core of the family. … it was not a burden,”
recalled Wendy, who continued to portray her mother-in-law as her “role model.” Katherine
explained it in this way:
I guess it would depend on your relationship with the person you're caring for because it's
either you want to do it, or you're forced to do it. So, there's a difference. I wanted to take
care of my dad. … for him to wake up knowing that I did this, so I was happy to be his
caretaker.
While each of the 12 participants described positive overall feelings about being their
loved one’s FC, some of them also had mixed emotions. The participants’ hybrid identities from
multicultural backgrounds and upbringings clashed at times. For instance, FCs including Nancy,
Lucy, and June, struggled to balance traditional values with more individualistic, societal norms.
June, who felt the sudden loss of her “carefree lifestyle” said, “It’s been very, very hard and
scary… but it’s a privilege too, not just a duty. I felt privileged to do this for them.” Lucy also
recalled how “hard” the experience was for her. “There was a lot of pressure on me,” she
explained, but she also spoke of how driven she became after her experience. “It was powerful.
… my pain of having to go through this life without my one person that I loved the most.” Nancy
described her experience before her mother lost her vision, which then prompted her to become
her mother’s FC, “I felt super guilty because I prioritized my freedom over taking care of her…
and now I don't have as much freedom as I used to.” Participants were conflicted and described
complicated emotions when evaluating their overall experience.
Caregiving Practices
The second theme encompasses how cultural traditions influence caregiving practices.
Examples include the common taboo against discussing EOL care and the expectation for
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children to live with and care for their aging parents. These traditions can make it difficult for
families to plan for the future, leading to last-minute decision-making, stress and burden, and
potential conflicts. Furthermore, another cultural tradition was that you never send a parent to a
nursing home. This tradition can place a heavy burden on caregivers, who might feel pressured
to provide care at home despite the challenges.
Each participant was asked to describe their family traditions and details about their
upbringing. Cultural traditions came up around health, mental health, death, and dying. Nancy
described how mental health was a taboo for the elderly, yet it was something she felt they
desperately needed. Because of that taboo, it took time for her to convince her mother to go to
therapy. It was not until they found “culturally connected therapy” for her mother that
circumstances eventually improved for them. Lucy also recalled, “I never saw my mom go to the
doctor, so it was very unfamiliar, and death was also not really talked about. … you don’t talk
about those things.” She then described the experience it led to, “A lot of times my mom hated
going to her visits. … it added to the barrier of having to beg her to go to her appointments. …
she was afraid of what they were going to tell her.” Managing care around these taboos impacted
how the FC had to provide their care.
Another cultural tradition that came up was the expectation for children to live with and
care for their aging parents. Michelle experienced this with her father, who she said was “very
strict” with certain traditions and beliefs. She grew up with the tradition where females have to
live at home until marriage, “I fought a good fight in trying to move out during college. I lost.”
Michelle, now 49 at the time of the interview, remained living at home with her mother and
became her FC. “Rather than me move out… It was just easier to be here… constantly there for
her,” she explained. Nancy moved out and acknowledged, “I needed my independence,” but then
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went on the share, “I felt super guilty because I prioritized my freedom over taking care of her.”
Nancy had “parental pressure” and said, “A lot of Asian cultures are like that, and I feel that I
didn't have a way out. … I didn't have a way to say, ‘I can't, I don't want to,’ without her feeling
offended.”
There was also the traditional expectation to provide parental care over sending their
elders to a nursing home, which came up recurringly. Drew, who initially lived far from her
mother, was required by HCPs to send her mother to a skilled nursing facility upon hospital
discharge. The experience was difficult and lacking, and she shared that her mother preferred to
be with her daughter. Drew intricately detailed the type of care she provided her mother and said,
“You’re not going to get that in a nursing home.” Elizabeth declared, “There is no main reason
why we should have to employ a caregiver for her. I'm still around.” Heather, who was a cocaregiver with her aunt, shared that for her aunt, “It was expected… and I think that goes back to
the way they were all born and raised in Afghanistan, very traditionally, culturally.” Her aunt
was the oldest daughter, unmarried, and had no children. “It was just expected that she would be
the one to be that primary caregiver for my grandmother,” she emphasized. Juliet shared how she
could never send her mother-in-law to a home. It was evident these types of cultural traditions
influenced the way FCs provided care.
Family Structure and Dynamics
Family positions, birth order, social gender roles, and stereotypes play a significant part
in caregiving. Females are often expected to take on nurturing roles (Grigoryeva 2017; Lee &
Tang, 2015; Sharma et al. 2016; Xiong et al., 2020). In many of the interviews, the patient,
regardless of being male or female, was said to prefer the female participant as their primary FC.
Of note is that not all participants shared a close kinship with their care recipient but each one of
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them described positive feelings and closeness with their care recipient after becoming their FC.
Family structures and hierarchy for family caregiving was defined by various factors that include
gender, stereotypes, birth order, family position, and the relationship between the patient and FC.
Social Gender Roles and Stereotypes
Besides cultural traditions, an example of gender as a determinant on who becomes the
FC in the family was when a patient is a female or the mother. In Drew’s experience, her mother
could not bathe herself or “even wipe herself,” but she refused help. Drew had to convince her
mother, “You’re going to have to give up your pride… dignity,” and was eventually able to help
her with it. She then shared how she could not imagine her mother wanting or allowing her
brother to do the same. Hannah felt her “nurturing personality” would make her the FC for their
father, even if instead it was her brother that lived with their father at the time. She also went on
to state, “My brother would probably rely on me still. … he would not be able to do it.” This
preference for female caregiving can result in more females bearing the primary responsibility
for family caregiving.
A different example related to gender is how financial responsibilities are expected from
males in certain cultures. This exact family dynamic matched Lucy’s experience, where she was
the primary FC, her sister was the secondary FC, and her brother only needed to provide
financial support, which she still had to contribute to as well. Lucy described, “The women in
my culture often had to be the roles to take care of the responsibilities, while the men were a
little bit more financial. … as long as they kept that financial.” Even though Lucy said her
brother was living with her and her mother at the time, he did not have to provide FC duties.
Gender norms and stereotypes within family cultures influence the type of caregiving
responsibilities each family member takes on.
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Birth Order, Family Position, and Kinship
Birth order, family positions, and kinship affect the family hierarchy. Examples include
how certain cultures expect more responsibilities to fall on the eldest child or single adult
children should be the one to take on caregiving. This family dynamic matched the experiences
of Elizabeth, Katherine, Hannah, Juliet, and Grace. Having children can shift caregiving duties to
other family members, while being single can mean taking on more responsibility, which was
what happened to Elizabeth when she took on the FC role due to her sister being pregnant at the
time. Elizabeth described her family tradition, “In case of death of the two parents, the eldest
sister becomes the parent.” Her family planned to transition the FC role to her eldest sister in 2 to
3 years when she was “in a better position to provide care.” However, Elizabeth went on to
share, “Then we thought that it will be better to be me because I understand her as the youngest
child, and I can give the best to her [mother].” Katherine was never informed of specific family
traditions but followed her family dynamics “by observing.” She explained, “You kind of know
growing up that as the oldest, you're responsible. … it's always the oldest sibling’s duties to then
be the next in line to take over duties left in the family.” Grace was the oldest of five siblings and
described herself as “the second mom.”
Despite family positions and birth order determining the family hierarchy, the connection
with the patient also decides family roles, as kinship could be a leading reason for an individual
to become the FC. An example would be Wendy’s experience. She was close to her mother-inlaw and her husband was “the favorite child,” so she then became the preferred and designated
FC as his wife. Even though her mother-in-law’s biological daughter had the means and finances
to be her FC, she preferred Wendy due to their relationship. Even though in Lucy’s case, she was
forced to take on the FC role because she was the youngest daughter that still lived at home with
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their mother, Lucy also revealed, “My mom and me were a little bit closer. … my sister… there
was a void there. … she had more pressure as the older sister.” A close relationship shared with a
care recipient can dictate preferences on who takes on the FC role. As a result, family hierarchy
is impacted by birth order, family position, and kinship.
Access to Support for Patient and Family Caregiver
Language and medical translation needs were major factors that impacted both the
patients’ and FCs’ ability to access support. FCs who speak the same language as the patient can
communicate more effectively with the patient, thereby reducing stress and improving care
quality. There was a reliance on FCs to be translators, as patients and families prefer them over
professional translators. Because of this, having FCs that bridge language gaps can also
potentially cause families to avoid external support from the health care team. Consequently,
placing additional burdens on FCs.
Nine of the participants were tasked with medical translation, either occasionally or as the
sole communicator or as the health care proxy. Grace “helped with mostly translating” and with
decision-making for her cousin. Lucy’s mother, who did not want to burden her children with her
illnesses, lacked access to proper care before Lucy eventually got involved in helping her with
medical translation. “She didn’t know English. … that's how I inserted myself into becoming her
caregiver,” Lucy explained. Similarly, Heather shared, “There was also a language barrier… my
grandmother and aunt didn’t speak any English.” In Drew’s case, she was already expecting to
help her ill father-in-law as his FC soon. Yet, her father-in-law’s eldest son and his wife lived
closer. Drew explained how language was why she would still be preferred as his FC instead of
the eldest daughter-in-law, “There would be a little bit of a language barrier for her if she were to
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care for them.” Subsequently, language is a cultural factor that determines the ability to access
support, along with impacting patient preferences to have an FC that speaks their own language.
Discussion on Research Question One
Research Question One sought to identify the challenges female FCs in the United States
face in serious illness situations. The intention of this question was to understand these types of
challenges so that public policy, health care organizations, and clinical and mental health support
services can better support patients and FCs, as well as develop interventions to reduce risk
factors. Learning about these challenges directly from FCs highlights the need for
comprehensive support systems and resources to aid FCs in navigating the multifaceted demands
of their roles. The findings reveal FCs experience physical and emotional challenges, health care
management challenges, interpersonal and communication challenges, and financial and
logistical challenges.
The theme of physical and emotional challenges encompasses a broad range of issues that
FCs face, including burnout, compassion fatigue, emotional and physical exhaustion, and stress.
FCs often experience emotional strain and guilt as they juggle the intense responsibilities of
caregiving, which frequently leads to sleepless nights and a heavy workload. These findings
highlight how FCs are at a considerable risk for burnout, which poses a risk to the FCs’ own
health, as there are known biological repercussions from burnout (Bayes et al., 2021).
Furthermore, burnout adversely impacts the quality of life of FCs, is linked to depression and
anxiety symptoms in patients, and can even lead to abusive conduct by the caregiver (Alves et
al., 2019). Understanding the physical and emotional challenges of FCs helps emphasize the
importance of providing emotional support and mental health resources to FCs to mitigate these
adverse effects.
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The next theme encompassing health care management challenges involves getting
patients to accept care, managing advocacy burden, making health care decisions, preparing
special diets, treatment planning, and making medical appointments. FCs struggle with
inadequate support, a lack of information, and navigating complex health care systems. Although
it is well acknowledged in the health care industry that patients and FCs require assistance and
information to navigate the intricacies of serious illnesses, not all clinics or hospitals provide this
support.
Interpersonal and communication challenges include barriers such as caregiving
teamwork, miscommunication, cultural differences, decision-making harmony, and relational
strain. Family dynamics and the overreliance on the FC can lead to significant interpersonal
stress and isolation. In addition, communication challenges can compound existing problems and
lead to various negative outcomes.
The last theme identified covers financial and logistical challenges that involve access to
care and resources, coordination of services, daily caregiving tasks, employment issues, financial
burden, logistics management, and time management. FCs can face significant financial strain
due to costs and potential loss of income, as documented by Bell et al. (2019). The financial and
logistical difficulties FCs encounter can considerably affect their capacity to deliver quality
treatment.
Discussion on Research Question Two
Research Question Two sought to understand how cultural factors impact FC
experiences. The intention of this question was to understand how influences from multicultural
backgrounds define the FC’s world view, perceptions, and decision-making, to help lay the
groundwork for culturally sensitive interventions that address adaptive coping and strategies to
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deal with multiple demands as an FC (Ng & Indran, 2021; Schrank et al., 2016). The cultural
humility lens helped view cultural experiences from the perspective of each unique individual.
Overall, the findings show cultural factors significantly shape the FC’s experiences and how they
approach caregiving. Key findings reflect that the FC’s perceptions of caregiving are influenced
by their cultural beliefs, values, and expectations, as well as their own cultural adaptations and
identities. The FC’s caregiving practices are influenced by their cultural traditions and their
family structure and dynamics. Social gender roles and stereotypes are based on the FC’s birth
order and the family position they hold, and their kinship and relationship to their care recipient.
Lastly, the patient and FC’s access to support is affected by language needs. These were the four
themes impacted by the cultural factors that emerged in the study.
The perception of caregiving is influenced by cultural beliefs, values, and expectations.
In many cultures, caregiving is seen as a moral duty and a respected role, often influenced by
deep-rooted values about family and community. This perception can provide FCs with a sense
of purpose and fulfillment but can also lead to high expectations and pressure. Cultural
expectations, tied to filial piety, can add pressure and lead to FC burden, especially if the
designated FC is unable or unwilling to meet these expectations (Pan et al., 2002). Cultural
values can shape how FCs view their responsibilities, potentially leading to increased stress
when expectations are not met. At the same time, filial pious beliefs also led to overall feelings
of fulfillment of their FC duty and positivity in taking on the role to help their loved one. Ng and
Indran (2021) further suggested that understanding these cultural beliefs is essential for
developing interventions that respect and incorporate an FC’s cultural background. FCs can also
conflict over their multicultural identities and cultural expectations, which can positively or
negatively affect how they perceive caregiving.
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FCs from multicultural backgrounds may experience unique challenges as they navigate
diverse cultural expectations and practices. Adaptations to caregiving practices may require
balancing traditional practices with health care demands. According to Dilworth-Anderson et
al.’s 20-year review (2002), multicultural FCs often face additional stressors due to these
adaptations but can also develop innovative coping strategies that draw from their diverse
cultural experiences. This study aligns with Dilworth-Andersen et al.’s (2002) finding that FCs
find positive self-fulfillment in their experience as an FC.
Cultural traditions significantly influence caregiving practices, dictating how care is
provided and by whom. For example, this study revealed that family commonly provides elder
care in Asian and Hispanic cultures, typically by the eldest daughter. These traditions can dictate
caregiving roles and methods. At times, traditions can also conflict with Western medical
practices. According to Zarzycki et al. (2022), being sensitive and considerate to integrate
cultural traditions into caregiving plans can improve the effectiveness of patient care and FC
satisfaction. It is important to consider cultural traditions when planning care and making
decisions.
Cultural factors such as social gender roles, birth order, and kinship relationships, also
play a critical role in caregiving. These factors can determine the family structure and hierarchy.
Cultural norms often determine who becomes the primary FC and how to distribute caregiving
responsibilities. Xiong et al. (2020) revealed that these roles can lead to gendered expectations,
where females are more likely to assume caregiving duties, sometimes at the expense of their
career and personal goals. Certain positions within the family can be traditionally associated with
caregiving responsibilities. For instance, the eldest daughter may be expected to take on the
primary FC role. Consequently, close kinship ties often mean stronger emotional bonds, which
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can be both a source of support and stress. FCs who feel a strong kinship obligation may
experience higher levels of emotional strain but also report a greater sense of duty and
satisfaction from their FC role (Yu et al., 2018). Family dynamics paired with cultural
expectations can lead to both positive and negative experiences for the FC. Understanding these
family dynamics is important for creating supportive policies and programs that address inherent
cultural biases.
Finally, language needs and barriers can significantly complicate access to support for
patients and FCs. Patients and FCs who do not speak the dominant language of their health care
system struggle to access resources, understand medical instructions, and communicate
effectively with HCPs. In addition, patients often prefer an FC that speaks their own language
and prefer translation services from their own family over strangers. These language needs and
preferences then place more responsibilities on the FC to translate and navigate. The extra duty
of complex medical translation, which often requires professional certifications and training for
accuracy, added to the patient’s language barriers can lead to misunderstandings, reduced quality
of care, and increased stress (Silva et al., 2016). Language related obstacles can greatly impede
patients' and FCs' access to information and support in the health care industry.
Summary
Though the participants were asked to conduct a one-hour long interview, 11 of the
participants opted to spend more than an hour sharing details of their experiences. One
participant chose to send an email the day after her interview to share additional information
about feelings and experiences she felt were important. “Grief can lead to all kinds of strange
emotions,” she said, and later mentioned how sharing these mixed and difficult emotions in the
interview helped her cope. After the interview, ten out of 12 of the participants expressed
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appreciation and commented on how helpful it was to discuss their experience as an FC. They
described the interview experience as therapeutic and introspective.
Research Question One aimed to identify the challenges female FCs in the United States
experience in their role caring for a serious ill adult. Key findings determined FCs experience
physical and emotional challenges, health care management challenges, interpersonal and
communication challenges, and financial and logistical challenges. A wide range of problems
that FCs deal with are under the theme of physical and emotional challenges, including burnout,
compassion fatigue, loneliness, emotional and physical exhaustion, and stress. Getting patients to
accept care, dealing with advocacy burden, making health care decisions, managing diet,
treatment planning, and making medical appointments pertain to the theme of health care
management challenges. Caregiving teamwork, miscommunication, cultural differences,
decision-making harmony, and relational strain were examples found under the category of
interpersonal and communication challenges. Finally, access to care and resources, coordination
of services, daily caregiving tasks, employment issues, financial burden, logistics management,
and time management make up the financial and logistical challenges FCs face.
Research Question Two explored how cultural factors impact FC experiences, revealing
that cultural beliefs, values, and expectations significantly shape caregivers’ perceptions and
practices. The results of the study demonstrate cultural influences have a major impact on the
FC's experiences and how they provide care. Key findings reveal beliefs, values, and
expectations, as well as the FC's own cultural adaptations and identities, shape the FC's
perceptions of caregiving. Secondly, cultural traditions and family dynamics guide the FC's
caregiving practices. Next, the FC's birth order, family position, and kinship to the care recipient
affect social gender roles and stereotypes. Lastly, language affects the patient's and FC's access
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to support. The findings underscore the importance of culturally sensitive interventions to better
support FCs from diverse backgrounds.
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Chapter Five: Recommendations
This study examined the cross-cultural experiences and perceived challenges of female
FCs caring for a seriously ill loved one in the United States. Using the cultural humility theory
(Foronda, 2020) as a framework, the study evaluated the cultures, backgrounds, experiences,
challenges, and perceptions of 12 participants with current or past family caregiving
responsibilities. If health care organizations can provide culturally sensitive interventions to
reduce FC burden and promote health and well-being, the quality of life for FCs and patients
from diverse, multicultural backgrounds will improve (Tran et al., 2023). Based on the insights
shared, three recommendations emerged for health care organizations to improve multicultural
caregiving support to FCs who play an instrumental role in patient care. The three
recommendations are for health care organizations to develop accessible caregiver education,
resources, and support programs, promote an FCC model, and implement comprehensive
caregiver assessments.
The findings of this study addressed the two research questions focused on what FCs
describe as the challenges they experience in their role and how cultural factors impact their
experiences. The research revealed eight findings related to FC challenges and cultural impacts.
The four findings that encompass the types of challenges FCs primarily encounter are physical
and emotional challenges, health care management challenges, interpersonal and communication
challenges, and financial and logistical challenges. The four findings impacted by cultural factors
that shape the FC experiences are the perception of caregiving, caregiving practices, family
structure and dynamics, and access to support. Overall, the findings were consistent with existing
literature. FCs in the study had similar perspectives and barriers, even with a diverse range of
cultures and factors affecting their experiences. These similarities were not surprising,
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considering the research criteria used in the study, which included unpaid female FCs that were
either first- or second-generation Americans, who lived with their care recipient in the United
States, and worked simultaneously or gave up their job to fulfill the FC role. The next section
will cover a detailed discussion of the recommendations for practice based on these study
findings.
Recommendation 1: Provide Caregiver Education, Resources, and Support Programs
The first recommendation is for health care organizations to create education, resources,
and support programs for FCs. These programs would be specifically designed to accommodate
language needs; to respect and integrate cultural beliefs, values, and traditions; to provide access
to support groups, counseling, and respite care programs; and to disseminate resources and
training that assist FCs in managing health care tasks, understanding medical terminology, and
navigating financial and logistical systems. Resources would include materials available in
various language options that reflect the cultural and linguistic needs of different communities.
Examples include guides and simple training modules on medical information, how to navigate
the disease trajectory in health care systems, how to provide physical care to those that are
immobile, and how to manage specific disease types and multiple illnesses, all contextualized
with the understanding of cultural beliefs and traditions FCs may have.
As the study found, FCs have minimal training before taking on their role. FCs are often
undertrained, and the issue worsens when a patient’s serious illness progresses with caregiving
responsibilities becoming more complicated (Berg et al., 2019). All but two of the participants
reported their lack of knowledge and preparedness in how to perform their caregiving tasks, thus
having to learn as they go. Consequently, adding risks to patient safety and reducing quality of
care. Though, the two participants that did not need caregiver training were notably HCPs by
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profession. Moreover, FC responsibilities can change rapidly during the disease trajectory, and
various levels of technical skills may be involved. Therefore, education and resources should be
widely accessible for FCs through practical formats, such as web-based options that are readily
and repeatedly available on their own time. Further, these flexible formats offer a practical
approach to provide accessibility to FCs from rural locations with limited options, and for those
with language barriers or cultural barriers that prevent them from voicing their needs.
Besides education, programs should also include resources and encourage FCs to
participate in options that support mental health and well-being. One of the participants
confirmed the effectiveness of joining various support groups as a resource to gain knowledge
that helped her through her experience. With the emotional strains from family caregiving,
resources such as counseling, support groups, caregiver advocacy groups, advisory groups, and
other stress management options would be beneficial for FC’s health and help them develop
coping strategies. In addition, it is essential for FCs to access information about potential
resources, including respite care programs, tax credit information, paid family leave information,
in-home services, and Medicaid.
Throughout the interviews, it was evident how important it is for FCs to receive relevant,
accessible, and effective support that resonates with their unique cultural contexts. Therefore,
caregiver education, resources, and support programs should also offer practical strategies and
resources that are easily accessible and sensitive to the diverse worldviews of patients and FCs.
These programs should address norms and expectations around family caregiving, culturally
sensitive counseling, and consider the cultural factors motivating the FC (Zarzycki et al., 2022).
Culturally appropriate interventions can reduce FC stress and improve their overall well-being by
providing support that aligns with their cultural values and expectations (Tran et al., 2023).
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Providing and encouraging the use of multilingual support and resources ensures FCs have
access to necessary information and support. By addressing these challenges through education,
resources, and support programs, some burden on FCs can be alleviated, which also leads to
better care for the seriously ill patients they support.
Furthermore, Research Question Two and study findings highlight the importance of
cultural factors that shape the FC experience. Culturally adapted interventions are more effective
in engaging FCs and improving outcomes (Dilworth-Anderson et al., 2002). By providing a
culturally tailored approach to education and support, these programs can enhance an FC’s
ability to better manage their emotional, physical, financial, logistical, and health care
challenges. If FCs manage challenges and health care tasks more effectively, stress reduction and
improved outcomes can occur for both patients and FCs (NASEM, 2016). By improving FC
preparedness and knowledge, health care organizations have the potential to assist patients as
well as FCs to reduce depressive symptoms, perceived stress, anxiety, and low self-efficacy
(Leng et al., 2020).
With financial and logistical challenges also prominent among participants, a practical
strategy is to address financial strain, which is a major source of caregiver stress, particularly in
marginalized communities (Pinquart & Sorenson, 2003b). The study affirmed financial planning
resources and flexible work policies highly benefit FCs. Additionally, a concerted effort to align
health care organizations to all have programs that systematically increase awareness of existing
policies of government and public resources, and of the types of available support would help to
mitigate the financial and logistical pressures FCs face (Bell et al., 2019). A health care system
that anticipates and better prepares FCs for the financial and logistical challenges expected, can
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help FCs have peace of mind and allow them to focus more on the caregiving demands they
have.
The objective of this recommendation is to assist and support FCs in feeling more
prepared to provide safe treatment and quality care, which then positively impacts emotional and
physical challenges, health care challenges, and financial and logistical challenges. The current
lack of culturally tailored resources, education, and support exacerbates FC challenges.
Providing caregiver education and support to FCs on self-care, behavior management, selfmanagement, coping skills, lifestyle risk factors, and financial options is a prevalent intervention
health care organizations can implement for all types of patients and FCs with consistent
outcomes (Park et al., 2018). These programs benefiting FCs and patients should become
standard offerings for hospital systems in the international health care industry, as the family
caregiving crisis is a global problem (Zarzycki et al., 2022). Education, resources, and support
programs can significantly alleviate burdens for FCs and better engage them in their patients’
care.
Recommendation 2: Promote a Family-Centered Care Model
To enhance communication, reduce power imbalances, and respect cultural and family
dynamics, the recommendation is to encourage the adoption of an FCC model that acknowledges
and accommodates various family structures, social gender roles, and cultural traditions. This
recommendation is a practical approach to promote HCPs to use the FCC model as a tool to
address the diverse needs of patients, FCs, and families that would benefit from creating a
treatment plan together. Data from this study suggests the need for HCPs to better paper FCs for
caregiving. An FCC approach would address this by enhancing communication and information
exchange, taking into account cultural values and family dynamics, identifying the support needs
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of FCs; and by addressing the causes of potential conflict through increased education and
resources (Greene & Adelman, 2013; Kokorelias et al., 2019). FCC is necessary as an alternate
health care model to acknowledge FCs as part of the team and to balance the multicultural
perspectives that exist within diverse populations.
Findings of the study underscore the impact of family structure and cultural traditions on
family caregiving experiences. The FCC model would support diverse family dynamics and
respect the roles and responsibilities that different family members hold within their cultural
context. Narratives captured in the study revealed insights into the types of challenges, conflicts,
emotions, expectations, and power imbalances affected by cultural factors. An FCC model that
incorporates these cultural dynamics can reduce power imbalances by removing the single
authority physicians often hold and by advocating for shared decision-making amongst the full
health care team, which includes FCs and family members. FCC accentuates cooperation among
family members and engagement of family caregiving as a team concept (Kokorelias et al.,
2019), in so doing fostering a more inclusive and supportive environment for FCs.
Communication and social support are crucial for building trust and ensuring that FCs
can fully participate in the health care process. Patients and FCs frequently depend on their
physicians to help them make decisions, get information, and deal with social and interpersonal
issues. Growing evidence suggests that physician communication improves patient outcomes
(Arora, 2003). As a result, in the process of managing care, the patient-physician interpersonal
relationship is crucial. Even though most individuals prefer to leave decision-making to
physicians, preferences still differ depending on worldviews, situational factors, and cultural
factors, as depicted by the cultural humility framework used in the study. To optimize the
positive effects of patient and FC involvement on health outcomes, strategies for increasing their
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involvement must be adaptable and sensitive to individual preferences (Arora, 2003). This
recommendation acknowledges that familial social support impacts serious illness outcomes
(Rosland et al., 2012), thus it emphasizes the need for family involvement in coping techniques
and family support to motivate and engage the patient.
Additionally, the study identified language barriers and interpersonal and communication
challenges as significant issues for FCs and their patients. Language support services are
fundamentally required in the U.S. hospital system. However, it is not universally available in
outpatient clinic settings, and as reflected in the study, patients may prefer their FCs or family
members for translation instead. In the study, patients limited in English proficiency relied
heavily on the FC participants for translation instead of using professional interpreters. In a
team-based approach using the FCC model, having group discussions to better understand how
to utilize professional interpreters will increase the chances of providing better patient support,
better communication, better patient satisfaction and results, and fewer translation errors (Flores,
2005). With 21 million Americans limited in English proficiency, implementing an FCC model
that promotes language-concordant care will improve health outcomes and satisfaction (Flores,
2005). This process will support FCs from diverse linguistic backgrounds to better address
interpersonal and communication challenges. FCC is a necessary, alternate health care model to
recognize FCs as part of the team, improve communication and relationships, and balance the
multicultural perspectives that exist within a diversifying society.
Recommendation 3: Implement Caregiver Assessments
The third recommendation identified to better support the multicultural needs of FCs is
for health care organizations to implement comprehensive caregiver assessments as part of their
standard intake process. None of the participants in the study had any experience receiving any
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type of caregiver assessment to establish the family dynamic and understand how caregiving
duties will be distributed for the patient. Using a caregiver assessment as a standardized tool can
help identify relevant cultural factors, an FCs’ ability to provide aid, the necessary management
needed for the patient’s safety, and the types of support an FC may need (Riffin et al., 2021).
The health care industry can improve and alleviate interpersonal and communication
barriers by having a more structured approach to communication and a better way to establish
the physician-patient-FC, triadic relationship. Addressing these challenges will also help
alleviate other hurdles FCs experience that are ripple effects of communication problems. Instead
of using standardized tools to evaluate the needs and risks of FCs, such as a caregiver
assessment, currently HCPs primarily employ informal, unstructured interactions (Riffin et al.,
2021), which is inconsistent in covering the full range of potential needs and issues FCs
experience.
Standardizing a caregiver assessment at intake is an efficient and consistent method for
HCPs to capture the needs of both their patient and the FC (Riffin et al., 2021). Involving FCs in
this way creates understanding and gives FCs opportunities to participate in the planning of care,
information share, and share decision-making with their own needs and situation in mind (Park
et al., 2018). A caregiver assessment should start at the beginning of treatment planning and
undergo reassessment when a patient’s condition significantly worsens. This process will support
FCs and continuously allow HCPs to prepare them for growing complexities in their caregiving
duties (Berg et al., 2019). To support HCPs in establishing a foundation of understanding with
patients and FCs and to tailor communication and health care plans to multicultural needs, health
care organizations should incorporate caregiver assessments into intake procedures.
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Recommendations for Future Research
To further address the challenges FCs experience in a culturally diverse U.S. population,
future research should explore the development and effectiveness of policies and economic
solutions designed to support FCs across different ethnic and cultural backgrounds. Given that
the family caregiving crisis is a global issue, further research to establish a universal and
systematic process to involve and support FCs in health care is essential. In the United States, at
minimum a combination of federal and state-level policies that support FCs’ health, mental
health, and finances are necessary. To revamp the health care industry’s approach, Park et al.
(2018) and Wieczorek et al. (2018) suggested implementing a multilevel process to integrate
engaged, patient-and-family-centered care into the daily practice of HCPs across the industry.
This approach can promote better engagement of both the patient and the FC, achieve higher
quality of care, and reorient the basic HCP culture towards the patient and their FC.
Addressing the family caregiving crisis, especially with an aging and culturally diverse
population, requires policy changes that could help alleviate the burdens faced by FCs. Future
research is recommended to expand existing programs for FCs, such as paid family leave,
caregiver tax credits, workplace protections and flexibility policies, respite care programs, inhome care services, increase to Medicaid funding, lowering prescription drug costs, improve
nursing home care, and home-based care reimbursements covered by the Credit for Caring Act
(AARP, 2024; Caring Across Generations, n.d.). More research is also recommended to support
new policies to better support FCs and patients. Some examples of new policies and programs
include a national caregiver support hotline to offer guidance, emotional support, and connect
FCs with their local resources; offering culturally sensitive and multilingual options for
resources; developing a national long-term care insurance program to help finance serious illness
101
and elder care; providing pension credits or benefits for FCs; or adapting state policies into
federal policies such as the contentious End of Life Options Act to standardize medical aid in
dying (MAID) laws across the nation, which allows for patient autonomy while alleviating the
demand on FCs (Kaldy, 2023). A multi-pronged approach at both the federal and state levels is
vital to address the growing family caregiving problem.
To expand on the data from the study, additional research could examine the
effectiveness of integrating an FCC model within various cultural contexts, assessing how this
model influences both FC and patient health outcomes. While perspectives and in-depth
narratives from FC participants were the goals of this study, there is opportunity to examine the
viewpoints of HCPs and develop medical training centered around communication and cultural
humility to address the impact and authority influenced by their role. Case in point, Vermeir et
al. (2015) recommended incorporating communication in graduate and postgraduate medical
training to include caregiving as an essential part of quality care.
In addition, more specific questions arose during data analysis: What are the short and
long-term effects of caregiving on FCs' physical and mental health across different cultural
groups? To explore social capital within cultures, how do specific cultural expectations and
values shape an FC’s coping mechanisms? Addressing these questions could deepen our
understanding of the nuanced experiences of multicultural FCs and guide the development of
targeted support strategies.
Finally, future research should also aim to overcome the limitations and delimitations of
this study by expanding the sample size to include a broader range of cultural and socioeconomic
backgrounds, as well as exploring the experiences of male FCs, who were not the focus of this
study. Longitudinal studies that follow FCs over time would provide a comprehensive timeline
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of how FC challenges and needs evolve, offering further guidance for culturally responsive and
sustainable interventions. Future research in these areas can contribute to a more universal and
inclusive approach to supporting FCs.
Limitations and Delimitations
This qualitative study aims to explore cross-cultural experiences and perceived
challenges from the FC’s perspectives when dealing with serious illness in the United States.
Given the importance of the narrative aspects of the study, understanding the challenges,
barriers, and successes in their experiences led to the decision of viewing the research through a
cultural humility lens. For this reason, the theory of cultural humility (Foronda, 2020) set the
foundation for the conceptual framework in this study. With narrative inquiry and the use of
interviews, a limitation exists where truthfulness of participants is not within control.
Simultaneously, delimitation exists where interview questions were structured to stay focused on
the research questions, maintained the defined scope, and upheld the purpose of the study.
The reliance on self-reported data through interviews is a limitation as participants can
misrepresent their experiences. Additionally, the sample size of this study may limit the
generalizability of the findings. The qualitative nature of the study comes with potential
interviewer bias, where the researcher’s interactions and interpretations may influence the
participants' responses, thereby affecting the objectivity of the data.
A delimitation is the structured interview questions being focused specifically on the
research questions. This approach maintained the study’s purpose but limited the exploration to
the defined scope of cross-cultural experiences and FC challenges, potentially overlooking other
relevant aspects of FC experiences. The decision to use a cultural humility framework provided a
103
valuable lens but also narrowed the theoretical perspective by excluding other frameworks that
can offer additional insights into the FC experience.
Conclusion
The United States is facing a crisis as the demand for FCs surge, driven by an aging and
increasingly diverse population. This essential yet often invisible and underappreciated
workforce is under extreme pressure, bearing immense responsibilities with little to no
preparation or support. The lack of adequate resources and recognition is a problem that
threatens to overwhelm FCs and the health care industry. The physical, mental, and economic
toll on FCs is unsustainable. As the U.S. health care system grapples with this evolving
caregiving landscape, there is a pressing need for culturally sensitive interventions that recognize
the diverse backgrounds and experiences of FCs.
Now is the only time left. FCs are the backbone of the care infrastructure and health care
ecosystem, silently shouldering an enormous portion of the care burden. As an individual
working in health care and growing up with a multicultural perspective, I see family caregiving
as both a cultural expectation and a critical element of care embedded into multiple societies.
Yet, the U.S. health care industry runs on business models that prioritizes individualism and
revenue, often overlooking FCs. The system focuses on the patient, while FCs sacrifice their
emotional, financial, and physical well-being without receiving the support they need.
Furthermore, the consequences for sick and elderly patients that lack caregiving are devastating.
Caregiving is critical to prevent suffering and premature deaths. Failing to recognize and support
FCs will cause our care infrastructure to collapse, and more lives will be lost.
This study serves as a wake-up call, bringing to light the various cross-cultural challenges
FCs must overcome and offering actionable recommendations for health care organizations to
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better support FCs. By utilizing a cultural humility framework, the study underscores the critical
need for culturally sensitive care and provides a roadmap for health care systems to implement
tailored education, resources, and support programs, adopt an FCC model, and conduct
comprehensive caregiver assessments. The insights gained from this study have the potential to
influence state and federal policies, inform clinical practices, and drive systemic changes needed
to address the family caregiving crisis. This research is fundamental in contributing to the
broader goal of reducing health disparities and fostering an inclusive health care environment
that genuinely supports and empowers FCs, ensuring their indispensable role in patient care is
both recognized and sustained.
105
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Appendix A: Interview Protocol
Date:
Place:
Interviewer: Eleana Liou
Interviewee: Name (pseudonym)
Respondent Type:
Family Caregiver (FC): a role reflecting the personal and diverse nature of family and
helping relationships, which provides health and medical care at home, navigates the
complicated and fragmented health care system, and serves as surrogate decision makers
(NASEM, 2016). For the purpose of this study, this term refers to an individual who has a
significant personal or familial relationship with a seriously ill adult whom they provide
unpaid family caregiving support for.
Female
First-generation or second-generation American
Gave up job to be an FC or worked a full-time or part-time job while family caregiving.
Lived with the seriously ill adult patient in the United States while being their FC.
Introduction to the Interview(s):
1. Introduce self (name, a doctoral student and health care employee studying organizational
change leadership and focusing my dissertation on FC experiences with culture,
communication, and support).
2. Thank the participants for their time and agreement to participate in the interview.
3. Explain the purpose of the interview is to:
a. Understand the challenges family caregivers face in serious illness situations.
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b. Learn what cultural factors impact family caregiver experiences in health care.
4. Define “family caregiver” and define “seriously ill” for the purpose of this study.
Family Caregiver (FC): a role reflecting the personal and diverse nature of family and
helping relationships, which provides health and medical care at home, navigates the
complicated and fragmented health care system, and serves as surrogate decision
makers (NASEM, 2016). For the purpose of this study, this term refers to an
individual who has a significant personal or familial relationship with a seriously ill
adult whom they provide unpaid family caregiving support for.
Serious illness: a condition that carries a substantial risk of mortality and either
negatively impacts a person’s daily function or quality of life, or excessively burdens
their caregivers (Kelley & Bollens-Lund, 2018).
5. Explain this interview will be about 2 hours long.
6. Participation is voluntary, they can decline to answer any of the questions, and the
interview can be stopped at any time. Assure the participant we can take as many pauses
and breaks they would like.
7. Explain responses are anonymous: Participants will not be named, nor will identifiable
characteristics be used in relation to themes and comments shared. These conversations
are confidential, and the data will only be used to provide insight into the questions being
researched as part of this study.
8. Request permission to record:
a. Press Recording
b. Reiterate Permission to Record
9. Begin with screening questions:
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1) Have you provided care as a caregiver to a seriously ill adult friend or family
member? Either currently or previously.
2) Was the care and assistance you provided unpaid?
3) Did you live with this person while you assisted with their care?
4) Did this person you cared for get treatment in the United States?
5) Did you give up your job to be a caregiver? Or did you work a job while being a
caregiver (full-time or part-time)?
6) What is your gender?
7) Where were you born? Or do you have one or both parents born outside of the United
States?
Interview Questions
Interview Questions Potential Probes RQ Addressed Key Concept
Addressed
1. Please share your age,
race or ethnicity,
religion, and where
you grew up.
How do you think
these factors define
your culture?
RQ2. How do
cultural factors
impact FCs
experiences in
health care ?
Cultural Factor:
Diversity
2. Describe your family
unit. For example, do
you have children or
siblings?
Are there traditions
your family follows
when it comes to
health, caregiving,
RQ2. How do
cultural factors
impact FCs
Cultural Factors:
Historical
Precedent,
Political
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responsibilities, or
death?
experiences in
health care ?
Climate,
Situation, Beliefs
and Values
3. Who did you care for? Can you describe your
relationship with that
person?
RQ2. How do
cultural factors
impact FCs
experiences in
health care ?
Cultural Factors:
Political Climate
and Situation
4. What serious illness or
disability did this
person have?
Can you describe what
the illness was like for
them?
RQ2. How do
cultural factors
impact FCs
experiences in
health care ?
Cultural Factors:
Situation and
Environment
5. Is the person you
cared for now
deceased?
Would you be open to
sharing how the loss
of them affected you
(if deceased)?
RQ2. How do
cultural factors
impact FCs
experiences in
health care ?
Cultural Factors:
Beliefs and
Values, Situation
6. Explain why you
either gave up your
job to become the FC
or why you had to
Part-time or full-time?
Were you financially
struggling,
RQ2. How do
cultural factors
impact FCs
Cultural Factors:
Situation and
Environment
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work while being the
FC.
comfortable, or doing
well during the time
you were the FC?
What other forms of
financial support did
you have?
experiences in
health care ?
7. Can you describe how
your days were as the
FC?
What are some of the
tasks you had to do?
RQ1. What do FCs
describe as the
challenges they
experience in their
role?
Cultural Factors:
Situation and
Environment
8. Why did you take on
this FC role for this
person?
Were there other
people that could have
taken on the role?
How long did you
spend caregiving for
your family or friend?
RQ2. How do
cultural factors
impact FCs
experiences in
health care ?
All Cultural
Factors:
Diversity,
Historical
Precedent,
Political
Climate, Beliefs
and Values,
Situation,
Environment
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9. Did you feel prepared
and trained prior to
taking on your FC
duties?
What did you do to
prepare or train
yourself?
RQ1. What do FCs
describe as the
challenges they
experience in their
role?
Cultural Factors:
Situation and
Environment
10. Did you feel like your
opinion mattered to
the patient, your
family, the HCPs
when it came to
treatment planning?
RQ1 and RQ2 Cultural
Conflict, and
Outcome of
Cultural
Humility,
Ambivalence, or
Destruction
11. As the FC, how was it
like communicating
with everyone
involved (health care
team, family unit)?
Describe the dynamic
and the experiences.
RQ1 and RQ2 Cultural Conflict
12. Was it easy or difficult
to get support from
those involved (health
care team, family unit)
during your time as
the FC?
What was the process?
Was the support you
received helpful?
RQ1. What do FCs
describe as the
challenges they
experience in their
role?
Cultural Factors:
Situation and
Environment,
and Cultural
Conflict
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13. In your opinion, how
important do you think
it is to include FCs in
medical decisions and
the treatment plan
process?
Why do you feel this
way?
RQ2. How do
cultural factors
impact FCs
experiences in
health care ?
Outcome of
Cultural
Humility,
Ambivalence, or
Destruction
14. Can you share your
overall experience as
an FC for the person
you cared for?
As it relates to your
family and with the
person you cared for?
How was your overall
experience with
HCPs?
RQ2. How do
cultural factors
impact FCs
experiences in
health care ?
Outcome of
Cultural
Humility,
Ambivalence, or
Destruction
15. Is there anything you
would do differently
or want to change
regarding your
experience as an FC?
RQ2. How do
cultural factors
impact FCs
experiences in
health care ?
Outcome of
Cultural
Humility,
Ambivalence, or
Destruction
Conclusion to the Interview:
1. Ask if there is anything they would like to add that I did not cover.
2. Provide overall time frame of research study.
3. Invite them to contact me if they have anything else they would like to add.
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4. Ask if I can reach out again for any additional questions that come up after all interviews
are concluded.
5. Ask if they have any referrals for other potential participants.
6. Provide them with a $25 Amazon gift card as a thank you for their time and participation
in the study.
7. Thank them again for their time and agreement to participate in these interviews.
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Appendix B: Recruitment Flyer
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Appendix C: Information Sheet
University of Southern California Information Sheet
My name is Eleana Liou, and I am a doctoral student at the University of Southern California. I
also hold a role as Program Director in Supportive Care Medicine at City of Hope.
I am conducting research on family caregiver experiences around culture, communication, and
support within health care. The name of this research study is “Hidden Perspectives: Narratives
of Female Family Caregiver Experiences." I am seeking your participation in this study.
Your participation is completely voluntary, and I will address your questions or concerns at any
point before or during the study.
You may be eligible to participate in this study if you meet the following criteria:
1. You are currently or previously an unpaid caregiver for a seriously ill adult.
2. You lived with this seriously ill adult while they received health care in the United States.
3. You are female.
4. You are either foreign-born or have at least one foreign-born parent.
5. You gave up your job to be the caregiver or you worked while being the caregiver.
6. You are over 18 years old.
If you decide to participate in this study, you will be asked to do the following activities:
1. Participate in an interview over Zoom or in-person for 1 hour.
2. Please specify your interview preferences when scheduling.
After you complete the full interview, you will receive a $25 Amazon gift card digitally or inperson.
I will publish the results in my thesis. Participants will not be identified in the results. I will take
reasonable measures to protect the security of all your personal information. All data will be deidentified prior to any publication or presentations. I may share your data, de-identified with
other researchers in the future.
If you have any questions about this study, please contact me: eliou@usc.edu or (626) 367-8952.
If you have any questions about your rights as a research participant, please contact the
University of Southern California Institutional Review Board at (323) 442-0114 or email
hrpp@usc.edu.
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Appendix D: Participant Narratives
Participant: Elizabeth
Elizabeth is a Black, middle child, who grew up with two sisters and both parents in
Southern California with one parent from South Africa. In her family culture, traditionally the
first born is the one who becomes the caretaker if the parents are gone, but her eldest sister was
pregnant with complications when their mother unexpectedly became permanently disabled
physically and mentally by an accident. The original consensus was for her to take on the FC role
for 2 to 3 years while her older sister managed new motherhood. Elizabeth, who was 24 at the
time, was the second eldest sister and single with no children, therefore gave up her teaching
career and has since cared for their mother for the last 4 years. She has a close relationship with
her mother and can see herself continuing the FC role indefinitely. The overall experience with
their primary HCP has been positive but they have had other health care challenges with multiple
clinic visits, long wait times, and feelings of being treated unfairly due to their race. While she
was unprepared for taking on the FC role, she self-educated through observations of HCPs
during their mother’s hospital stays. Family and financial support came from her father and
eldest sister with trust and communication at the center of their relationship.
Participant: Lucy
Lucy is a Latina Mexican and the youngest child, who grew up with two older brothers,
one older sister, and her single mother in Southern California. Her family has cultural traditions
where males are expected to take on financial responsibilities while females took care of the
household, thus she was often taken care of by her older sister who was 16 years her senior. Her
family considered health care and EOL as taboo subjects that were not discussed. Eleven years
ago, Lucy was 19 years of age and a new high school graduate when she took on the FC role
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intermittently for 3 years for her mother who had a terminal illness. Because her mother could no
longer be their family provider with her illness, Lucy faced pressure to work full-time, put her
college education on pause, and take on the FC duties as the remaining daughter at home. While
financial support came from her middle brother, who also lived with them at the time, caregiving
help from the family was mostly lacking. Her mother was an immigrant from Mexico. She
experienced challenges with HCPs that included communication difficulties, language barriers,
accessibility issues, and a lack of health education and knowledge. Lucy shared how her mother
felt dismissed by HCPs and did not belong. Her mother was distrustful of medication and
treatments she did not understand and felt powerless in making decisions herself. Lucy felt the
frustration and burden of navigating these difficulties between the health care system and her
family. The death of her mother and her FC experience as young adult reshaped her life. Lucy
initially wanted to pursue a fashion degree but pivoted to pursuing medical education to become
a physician with the hope of providing the inclusive, culturally sensitive care that her mother
never received. Although she experienced trauma, isolation, loneliness, grief, and loss, she had a
close relationship with her mother and describes the experience as life-changing and powerful in
both a negative and positive way.
Participant: Heather
Heather is an Afghan American and the youngest child, who grew up with her parents
and her older brother, older sister, and her twin brother. They relocated many times but most of
her upbringing was in Northern California. Her Afghan culture plays a huge part of her identity
and forms the values and principles she lives by. A cultural expectation was to care for your sick
or elderly family members without being asked. Her mother took care of her maternal
grandmother, and it was normal for her to follow in similar fashion. Around the age of 22, she
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became the co-caregiver, along with her oldest aunt, for her paternal grandmother, primarily
because of cultural expectations and logistics. Heather was the sibling going to school in the area
at the time. Her aunt was designated to be the FC because she was the oldest daughter,
unmarried, and had no children. As she grew up bicultural, she often struggled and clashed with
her mother and grandmother. It was not until becoming her grandmother’s FC that they became
close. She found the experience rewarding, even if it became hard at her grandmother’s EOL.
She had financial and family support throughout the process, but it was exhausting too.
Her experience as an FC led her to go into the medical industry, and she grew to love working
especially with the elderly after her experience with her grandmother.
Participant: Katherine
Katherine is Asian American and the oldest child, who grew up with two younger sisters
and both parents in Southern California until the age of 4, then moved to Taiwan, and returned to
the United States at the age of 8. Family responsibilities were not discussed but expectations
were passed down in the form of stories and generational role modeling. For example, her eldest
uncle, who was the first in their family to immigrate to the United States, had the expectation to
help bring the rest of the family over and when her grandmother died, it was also him as the
eldest that oversaw all decisions. Though unspoken, she grew up with the idea she would be the
one to take care of her parents. Katherine had a close relationship with her father and took on the
FC role automatically in 2021 when she was 35 years old for over 2 years until his passing. Like
her eldest uncle, she oversaw all decisions for her father and remained working. She had
financial stability to access health care resources and explore options and felt marginally
prepared from her previous experience helping to care for her grandmother. There was much
self-education, research, and outreach to support groups that helped her navigate the health care
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system. Her position with HCPs was established since day one due to her role as the proxy and
translator, and while their experience with HCPs was positive, they had an instance where power
dynamics between the HCP and her own opinions caused conflict. Katherine had a sense of duty
as the eldest child, was happy and willing to make sacrifices, wanted to take care of her father,
and loved doing so. Family support did not fully exist as there was a lack of filial piety and help
from Katherine’s younger sisters, which caused feelings of resentment for some family members.
Being the sole decision maker for her father’s EOL treatment has burdened her with realizations
of her ability to directly impact a person’s life or death, which was further reflected when she
shared how she felt she could finally breathe once her father passed.
Participant: Wendy
Wendy was an only child that grew up with both her parents in China. She moved to
Southern California in 2015 to take care of her mother-in-law after she became terminally ill.
Her husband, also raised in China, is the youngest child and known as the favorite to her motherin-law. He has an older brother and older sister; all three have a close relationship. When it came
to their mother’s health, family meetings and communication between the three siblings were
essential. The sister, who was the most financially stable, paid for medical needs and services but
it was Wendy, the daughter-in-law, who took time off work to care at home for her mother-inlaw in the last 9 years until her passing. Wendy worked part-time and attended college while
caregiving. A key reason for why Wendy became the designated FC was because her mother-inlaw was not fond of her own daughter’s husband and preferred to live with her youngest and
favorite child. Wendy was unprepared and untrained to take on the complex duties of the FC, but
it became very natural to her once she took it on. Since she was not biologically related, she
rarely attended medical visits and did not provide opinions on treatment decisions for her
133
mother-in-law. Wendy shared that she refrained from sharing opinions out of respect for her
sister-in-law, who did not ask for it, even though Wendy was close with her mother-in-law and
understood her needs. The biological siblings working with HCPs were the ones to pass down
information and instructions of care. Hospice nurses who came to help provided the more
complex care requirements, like operating the oxygen machine or how to give medications. As
the sole FC for her mother-in-law, Wendy was the main person to report health condition updates
to her family and the HCPs. Wendy felt well supported by her in-laws and unburdened by the FC
role, even though she felt like an outsider to the family. At the core, the family rallied together
for her mother-in-law. Each family member, including Wendy herself, were filial pious and
supportive of each other in the ways they could be. The family relationship was strong following
the role modeling from Wendy’s mother-in-law. The experience near EOL was mentally
exhausting for Wendy, however, and losing her mother-in-law as the core of their family was
emotional. Nonetheless, she had feelings of great admiration, love, and appreciation for her.
Participant: Hannah
Hannah describes her cultural upbringing as a blend of both American and Chinese
cultures. She grew up in Southern California with her younger brother and both parents until the
age of 16 when her mother died of a terminal illness. Due to their circumstances at the time, her
father became her mother’s FC, and his sister came to help him at the time. Her parents came
from Hong Kong and had family traditions where males carried the family legacy and females
held the supporting role. Therefore, they consider their family dynamic non-traditional. Hannah’s
father eventually had two strokes. He recovered quickly after the first stroke, but the second
stroke in 2015 caused him a temporary loss of mobility and requirement for rehabilitation.
Hannah was 32 years old at the time and as the female in the household and the remaining child
134
living with him; she became his FC. Hannah has a reasonable relationship with her father where
they can communicate well together and have similar personalities but are distinctly independent
and live separate lives. With their trust and respect for each other, her experience navigating the
health care system and speaking to the HCPs for him was smooth. She had a supportive
employer that allowed her a flexible schedule so she could work full-time while caregiving. Her
husband stepped in to help when she worked in the day since he worked nights, and her younger
brother helped when needed. She managed FC duties without learning them by asking for help
and instructions from HCPs. Because her father could not speak properly for some time after the
stroke, she coordinated visits and updates to their family. Hannah felt it was an exhausting but
smooth process. She felt well supported by her family, who were protective of them after the
experience of losing their mother at an early age. Hannah shared that it was her duty to fulfill and
that she willingly took on the role of taking care of her father.
Participant: Nancy
Nancy is Filipino American and grew up in Southern California with her mother, who
was born in the Philippines. She was her mother’s only child but also had multiple half siblings
and a stepsister. She shares a close relationship with all her siblings. In her culture, she describes
how she owes it to her parents to take care of them. However, she also expressed how she felt
pressured by her mother to live with her until marriage, which caused difficulties in their
relationship. Her mother was eventually diagnosed with a chronic medical disease and at the
time, Nancy felt she selfishly allowed her mother to take care of herself because she prioritized
her own freedom. The disease was uncontrolled and led to her mother’s mental health issues and
blindness in 2015. Nancy shares how she still feels the guilt and regret to this day. She was 37
years old at the time and proceeded to uproot her life and delayed having children to become her
135
mother’s FC. She received support from her husband, her mother-in-law, was able to find a job
that allowed her to manage her FC duties, and her mother’s pension financially covered health
care needs. Despite this support, the sudden responsibilities she faced as the FC forced her to
self-educate through the internet and figure things out on her own. Eventually, through
hardships, emotional healing, introspection, learning forgiveness, communication, advocating for
her mother with HCPs, and teaching her mother to advocate for herself, Nancy and her mother
repaired their relationship and continues to put in the work each day. She describes the
importance of honesty and communication between her and her mother and with the HCPs.
Nancy shared her feelings of burden and loneliness as the FC for her mother, but even knowing
there was someone else who could have helped fulfill the FC role, she did not want to cause
disappointment for not taking on the role herself.
Participant: June
June is a Mexican American and grew up in Southern California with her older half-sister
and both parents. She is the only child to her parents together but had older half siblings from
them both. Her older half-sister is from her mother’s side, and she has five half-brothers from her
father’s side she did not grow up with. Her mother had a close relationship with her maternal
grandmother and lived by a saying she passed down to June, “gray hair deserves respect,” which
applied to all who are elderly and not only relatives. While her mother shared with June how
important it was to take care of her grandparents, she never expected June to do the same for her
and in fact, told her she wanted her to live her life differently. Although June’s grandmother had
two other daughters and two sons, they did not help. June’s mother and then June herself were
the FCs for her grandmother. In 2022, when June was 44 years of age, her mother had a fall,
followed by multiple unexpected medical conditions. At the time, June had simultaneous roles to
136
fulfill; she was the FC for her ill mother, provided care for her grandmother since her mother was
in and out of hospitals and nursing homes, and supported her teenage nieces who also lived with
her. June describes how one person in the family becomes charged with all responsibilities. Once
her family knew someone was managing things, they stopped helping. Because June was single
with no children, had close relationships with both her mother and grandmother, and her halfsister had her own mental health conditions to manage, the FC role for both defaulted to June.
However, she expressed her belief that it was also who she was, that helping those she loves
when they need help is a cultural expectation in her upbringing. In addition, she is a trained HCP
by profession, was able to continue working and provide financially, so she felt prepared for FC
duties and could navigate EOL care. It was her sudden change in lifestyle and freedom for which
she was unprepared. Even as an HCP, navigating the under resourced health care system as a
client was still hard and required her to fight and advocate, especially being that it was during the
COVID-19 pandemic. The additional complexity of caregiving for two loved ones together also
caused feelings of resentment towards her grandmother. June felt her mother had neglected her
own health while she was caregiving for her grandmother, which was hard for June to deal with.
She shared how her feelings of constantly bracing for a loved one to die or wanting them to die
in their sleep in a peaceful way to prevent further decline and pain caused immense emotional
turmoil. While the experience for June thus far has been difficult and frightening, she also feels it
is more than a call of duty, that it is a privilege to take care of her mother and grandmother.
Participant: Juliet
Juliet moved to Southern California from Cambodia with her parents when she was three
years old. She had a Christian and Chinese cultural upbringing because her parents, although
born in Cambodia and Buddhists themselves, were Chinese. She has a younger biological
137
brother, and an older brother and older sister adopted after their family was massacred in
Cambodia. In 2019, when Juliet was 41 years of age, she and her husband became the primary
FCs for her mother-in-law who had multiple chronic medical conditions, deteriorating mental
health, and a terminal illness. Her mother-in-law, who is Laos and once a national athlete, had a
difficult time with her mobility loss and accepting care from her children. Juliet expressed how
filial piety was their duty and their family rallied together to rotate caregiving duties. It was a
family and community effort. When asked why her and her husband took on primary FC roles,
Juliet felt the main reason was due to their responsible nature. She and her husband were always
the problem fixers in the family and although her sisters-in-law were ideal FCs because they
were unmarried and had no children, they were also not ideal options because of other
circumstances in their lives. Her older brother-in-law was another option and would help when
asked but was not naturally nurturing. Even with family support, financial stability, and great
health care experiences, conflict and resentment occurred amongst the siblings due to the
imbalance of duties and burdens each carried. The process of communicating between HCPs and
the family was exhausting for Juliet, especially pressured with managing health decisions that
were life altering. However, she shares how the experience has been humbling and honorable. It
is a test of character, but she wished she were better prepared for it. In fact, on top of her FC
duties she also has her own health issues and a recent stroke-like incident to manage. “You do
not even have time to get sick,” she shared.
Participant: Michelle
Michelle grew up in Southern California with her younger brother and both parents. She
was raised with a Japanese and Buddhist cultural upbringing. Her father was a religious and
conservative priest who died when she was 20 years old and her mother, who was born and
138
raised in Japan, was the true head of the family. Following the standard tradition in Japan,
Michelle was expected to stay at home until marriage, but her younger brother was allowed
much more freedom. While this cultural expectation was never requested from Michelle
throughout her conservative childhood, it was a tradition she followed. In their tradition, the
oldest male is responsible to take care of the family but overtime, Michelle has learned that it
was the person who was most naturally responsible that took on that role. Her brother is married
with three children and moves frequently with his military career. Hence, the FC role was
convenient for her to take on. On top of that, she felt it fit her more nurturing personality.
Michelle openly admits that while she did not mind becoming her mother’s FC, she would have
experienced guilt if she did not do it. It was her duty. Her circumstance was fortunate, as much
of her 2-year caregiving period occurred during the COVID-19 pandemic, where she was able to
work from home full-time still as a teacher. Her experience with HCPs was not always smooth,
and she had to self-prepare for many of her FC duties by reading discharge papers, booklets, and
obtaining instructions from HCPs. EOL care and working with the hospice care company was a
difficult time and Michelle had breaking points, which led her to get additional paid caregiving
services. There were no other options for help as her only brother lived far. Her support came
from the community and her group of friends. Overall, she describes the experience as positive,
that she would of course take care of her mother, but there were difficulties, and she is presently
drained. Michelle describes herself as someone that could never pause to do things for herself
and has always focused on helping others. With the recent loss of her mother, she said that she
feels she is now on strike.
139
Participant: Drew
Drew is a Japanese American who grew up in Southern California with both her parents
and her older brother. Her father died from a terminal illness when she was 19 years old, and she
watched her mother be the FC for her maternal grandparents. Traditionally in Japanese culture,
the older son carries on the family name and caretaking. In her mother’s case, she was the oldest
daughter. In her case, she explains the FC decision seemed to be a practical one with her having
more financial stability and support, and her brother also lived farther. She also expressed how
her mother felt more comfortable with her than her sister-in-law and they had a closer
relationship. Because her mother’s medical condition was sudden and unexpectedly occurred in
2023, she gave up work and her plans to return to work full-time, moved her mother into their
home, and adjusted many aspects of her lifestyle to focus on caregiving for her mother. Her
children were young adults by this time and able to help support and share some of the FC duties
as well, while she is the primary. Her experience with HCPs and the health care system was not
easy and she was not prepared to manage some of the tasks and machinery needed for her
mother’s care. Her daughter happened to be studying nursing and she was fortunate to also have
help from relatives that were HCPs. In fact, she shared that her father-in-law’s health has been
deteriorating and she was certain she would also become his primary FC. Although her husband
is the younger son, she could speak the same language as her father-in-law while her sister-inlaw did not. Therefore, it made sense for her to take on the role. Drew admitted that being the FC
is taxing with many duties, and she was not certain she could actually do it for anyone else other
than her family.
140
Participant: Grace
Grace was born and raised in Honduras and came to the United States with her cousin
when she was 19 years old. She felt her life in Honduras was good but had an alcoholic father
and felt the duty to leave so she could support her mother. Grace also had six siblings, three of
them who now live in the United States like her; she was the oldest and the second mother to her
siblings. Family traditions from her Hispanic culture expects her to value respect, to be the
protector and shield of the family, and that each of her and her siblings are to eventually take
care of their mother. Even growing up in poverty, she felt happy, and it shaped the person she is
today. Thirty years ago, when she was 26 years of age, she became the FC to her ill and disabled
male cousin. She shared how felt the responsibility to take on the role because her aunt was the
person who helped her come to the United States. However, when asked why she took on the
role, her response was that it was out of love. He was her family, her brother too. Family, love,
and family obligation are her core values. Her cousin could not speak but understood language,
so translating and advocating for him amongst HCPs was important but hard for them. Grace had
family support, work that supported her to juggle her FC duties, and was fortunate to be in the
health care profession with familiarity on how to navigate the system. She sees her FC role as
fulfilling, humbling, and feels appreciative for her own health and the opportunity to take on this
responsibility with her family support. Being the FC is just the person she is, and her family
knows they are always there for each other. Presently, her own adult children, particularly her
son who she describes has a big heart, have begun taking over the caregiving needs.
Abstract (if available)
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Asset Metadata
Creator
Liou, Eleana
(author)
Core Title
Hidden perspectives: narratives of female family caregiver experiences
School
Rossier School of Education
Degree
Doctor of Education
Degree Program
Organizational Change and Leadership (On Line)
Degree Conferral Date
2024-12
Publication Date
09/16/2024
Defense Date
09/10/2024
Publisher
Los Angeles, California
(original),
University of Southern California
(original),
University of Southern California. Libraries
(digital)
Tag
caregiving,cross-cultural communication,cultural diversity,cultural humility,family caregiver,family-centered care,health care,multicultural identity,OAI-PMH Harvest,serious illness
Format
theses
(aat)
Language
English
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Electronically uploaded by the author
(provenance)
Advisor
Datta, Monique Claire (
committee chair
), Canny, Eric (
committee member
), Ott, Maria (
committee member
)
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eliou@usc.edu;eleana.liou@live.com
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Liou, Eleana
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Tags
caregiving
cross-cultural communication
cultural diversity
cultural humility
family caregiver
family-centered care
health care
multicultural identity
serious illness