Family caregiver experiences and needs across health conditions, relationships, and the lifespan: a Qualitative analysis

ABSTRACT

Purpose

The purpose of this study was to understand the lived experiences of family caregivers who provide care to individuals across a broad range of ages, caregiving relationships, and health conditions and/or disabilities. Family caregiver research is typically siloed by health condition or by caregiving relationship, leaving gaps in understanding similarities and differences among caregivers.

Methods

We hosted three virtual focus groups with diverse family caregivers (n = 26) caring for an individual with a long-term disability and/or health condition(s). We conducted a qualitative thematic analysis using an iterative, inductive process.

Results

Participants primarily expressed shared experiences, despite having unique caregiving situations. We identified themes among a) caregiver experiences: Trying to Do It All, Balancing Complex Emotions, Managing Expectations, and Adjusting to Changes Over Time and b) caregiver needs: Longing for Breaks and Self-Care; Lacking Help, Support and Resources; and Desiring Understanding and Recognition.

Conclusions

These findings emphasize that many elements of the caregiving experience transcend care recipient age, condition, and relationship and are applicable to clinicians, researchers, and policy makers. The evidence of shared caregiver experiences can guide efficiencies in policy and practice (e.g., pooling of existing resources, expansion of interventions) to meet the needs of a broader population of caregivers.

KEYWORDS:

• Informal caregiving
• Qualitative
• focus group
• family
• disability

Acknowledgments

The research team was formed through the support of the University of Utah’s Family Caregiving Collaborative. The research team received support from Utah Clinical and Translational Science Institute resources and staff, especially Naomi Flake and Brieanne Witte. We also acknowledge the early collaboration of Dr. Melody Mickens on the project.

Disclosure statement

No potential conflict of interest was reported by the authors.

Data availability statement

Raw data, including audio recordings and transcripts, are not available to other researchers for replication purposes as we did not obtain written informed consent from the participants to share their raw data. However, to promote transparency, we have included the interview guide and final codebook detailing the codes, categories, and example texts.

Ethical statement

The study was approved by the University of Utah Institutional Review Board (approval no. 00132427). All participants were provided a digital informed consent document outlining the study purpose, risks, and benefits and provided verbal consent prior to participating in the focus group. Waiver of written consent was approved by the IRB as the study was no more than minimal risk and was conducted virtually during the COVID-19 pandemic.

Notes

1. Two individuals with recently deceased care recipients were interested in participating. However, our team was hesitant to include grieving participants in the focus group environment with current caregivers. We used individual interviews with these participants to allow them to share their perspectives without altering the focus group experience for others.

Additional information

Funding

The project was funded by the University of Utah’s 1U4U Initiative. Sarah Neller’s and Megan Hebdon’s efforts were supported by the National Institute of Nursing Research of the National Institutes of Health Award under award number [T32NR013456]. Emily Wickens’ effort was supported through the University of Utah Undergraduate Research Opportunities Program. The research team also received support from the Utah Clinical and Translational Science Institute, which is funded by National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number UL1TR002538. This work is the authors’ and does not imply endorsement by any of our funders. Funding for open access to this research was provided by University of Tennessee’s Open Publishing Support Fund.

Notes on contributors

Sarah A. Neller

Sarah A. Neller, PhD, APRN, AGPCNP-BC, is an Assistant Professor in the University of Tennessee, Knoxville College of Nursing. Her professional aim as a nurse practitioner, gerontologist, and researcher is to foster older adults’ well-being, healthy aging, and intentional living. Dr. Neller is also interested in promoting healthy longevity by exploring concepts like cultivating generativity and creating a legacy of values to help older adults stay engaged socially and communally.

Megan Thomas Hebdon

Megan Thomas Hebdon, PhD, DNP, RN, NP-c, is an assistant professor at the University of Texas at Austin School of Nursing. She is a family nurse practitioner, and her practice focuses on accessible care for individuals who are uninsured. Her research expertise is in family caregiving, with a particular emphasis on young and middle adulthood and financial well-being.

Emily Wickens

Emily Wickens, BS, recently graduated from the University of Utah with an Honors BS in Health, Society, and Policy with a minor in Chemistry. She is currently working as a study coordinator for the Utah Vascular Research Laboratory at the Veteran Affairs campus in Salt Lake City. Emi actively works to improve cardiovascular understanding and function within aging populations and veterans through this research. Her future goal is to obtain an MD degree so that she may closely work with chronically ill patients and foster family centered clinical practice in the treatment of degenerative diseases. She also is working to bolster health policy to support family caregivers both financially and educationally in Utah.

Debra L. Scammon

Debra L. Scammon, PhD, MS, is Emeritus Professor of Marketing in the David Eccles School of Business at the University of Utah. She has spent the last decade as a caregiver to elderly family members. Her research has focused on how to better integrate family caregivers into the primary care setting so that they are included in decisions about their patient’s care and that their own needs are considered in care planning.

Rebecca L. Utz

Rebecca L. Utz, PhD, is a Professor of Sociology and Associate Dean of Research and Graduate Education at the University of Utah. Her research focuses on how to support families who are facing end-of-life health transitions such as bereavement, caregiving, and advance care planning.

Kara B. Dassel

Kara Dassel, PhD, FGSA, FAGHE, is a Professor in the College of Nursing at the University of Utah. Her research promotes advance care planning in the context of Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) through community-based behavioral intervention models. She is also Co-Director of a Geriatric Workforce Enhancement Program, which provides workforce education to improve long-term healthcare.

Alexandra L. Terrill

Alexandra L. Terrill, PhD, is an Associate Professor at the University of Utah Department of Occupational and Recreational Therapies. She is a clinical psychologist, specializing in rehabilitation. Her research focuses on adjustment to chronic conditions such as stroke and associated disability, in particular as it relates to mental health and interpersonal relationships. In these areas, she has received NIH and foundation research funding, published 41 manuscripts in peer-reviewed journals, and presented/co-authored over 100 oral and poster presentations at local, national, and international conferences.

Lee Ellington

Lee Ellington, PhD, is a Clinical Psychologist, Professor and Robert S. & Beth M Endowed Chair in the College of Nursing at the University of Utah. She founded and directs the Family Caregiving Collaborative which is designed to advance caregiving science at the University. Her program of research focuses on the health and wellbeing of family caregivers of persons diagnosed with cancer.

Anne V. Kirby

Anne V. Kirby, PhD, OTR/L, is an associate professor in the Department of Occupational and Recreational Therapies at the University of Utah in Salt Lake City, UT. She has a clinical background as an occupational therapist with both children and adults. Her research uses a blend of qualitative and quantitative approaches, and also includes intervention development and testing. She focuses on research related to autistic individuals and individuals with other disabilities with an emphasis on quality of life.