There is ‘no cure for caregiving’: the experience of women caring for husbands living with Parkinson’s disease

ABSTRACT

Background

Parkinson’s disease is a progressive neurodegenerative disorder. The majority of the nearly 9 million people living with Parkinson’s disease are men. As such, caregiving is often assumed by wives as the disease progresses. However, there is little research about the lived experience of wives as they transition to caregivers.

Objective

To describe the lived experience of wife caregivers of male spouses living at home with Parkinson’s disease.

Methods

A descriptive phenomenological study. Semi-structured interviews were recorded and transcribed for analysis in Atlas.ti using Colaizzi’s method.

Results

Thirteen women, aged 50 to 83 years, were interviewed. Five themes emerged from the analysis, (1) caregiver who? (2) taking it day by day, (3) not sure what to do next, (4) just too much, and (5) caring is your soul’s growth, to support the central theme “there is no cure for caregiving.”

Conclusion

Transitioning from wife to caregiver was a gradual but difficult process. Although the wife caregivers wanted to be part of the health care team, they remained outsiders. Clinicians need to recognize the wives as care coordinators linking medical management with home care. Policy makers need to develop reimbursement models that provide wife caregivers with support groups, education programs, and telemental health services.

KEYWORDS:

• Caregivers
• caregiver burden
• emotional exhaustion
• Parkinson’s disease
• phenomenology
• qualitative research

Acknowledgments

We want to thank the Colorado Parkinson Foundation for granting access to their membership for the purpose of recruiting participants for this study. We are especially grateful for the willingness of the participants to share their lived experiences as caregivers despite their heavy daily burden. Finally, the authors acknowledge Deborah Goggin, scientific writer from the Department of Research Support at A.T. Still University, for her comprehensive editorial review.

Availability of data and material

The data used and analysed during the current study are available from the corresponding author on reasonable request. As the qualitative data resulted from interviews, the complete transcripts will not be released without the written consent of each participant. However, an expanded data file is provided in a supplemental table with additional quotes to support the analysis.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Authors’ contributions

All authors participated in the manuscript submitted for journal review. The following authors were involved in the stated phases of the project: study conception (DRW); study design (DRW, PAP); data collection (DRW), data analysis (DRW, PAP); drafting the manuscript (DRW; PAP); table development (DRW; PAP); substantial revisions to manuscript (DRW, PAP); and senior scholar guidance (PAP).

Ethics approval and consent to participate

The current study was conducted according to the guidelines of the Helsinki Declaration of 1975 and approved by the A.T. Still University Arizona Institutional Review Board (protocol no. 2021–186). All participants provided an informed consent to participate in the study.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/17482631.2024.2341989

Additional information

Funding

This project was supported through a research grant from the Colorado Parkinson Foundation [no. 2021-08.001] and a research dissemination grant received from the Universidad Norbert Wiener [no. VRI-D-2022-10-001-RDG] to promote the availability of scientific knowledge for researchers in low-income and middle-income countries.

Notes on contributors

Dawn R. White

Dawn R. White is a psychologist and health services researcher. Her research interests include neurodegenerative diseases focused on symptom management and caregiving in Parkinson´s disease. In addition, Dr. White is engaged in collaborative research focused on evidence synthesis and improving the work environment of healthcare professionals. Dr. White is a visiting assistant professor in health sciences (University of the Pacific), research fellow in evidence synthesis (EBHC South America: A JBI Affiliated Group), and researcher at the South American Center for Qualitative Research (Universidad Norbert Wiener). She is also an adjunct professor in health sciences (Centura College) and a special procedures radiology technician at Sentara Hospital. Dr. White earned a D.H.Sc. in global health (A.T. Still University), a Ph.D. in psychology (Walden University), and M.A. in psychology (Walden University), and a B.A. in psychology (Old Dominion University).

Patrick A. Palmieri

Patrick A. Palmieri is a nurse leader, global health expert, and research methodologist. Dr. Palmieri is a professor at the School of Nursing at Excelsior University, and senior researcher at the Universidad Norbert Wiener. He directs two international research centres including the EBHC South America (JBI Affiliated Group) and the South American Center for Qualitative Research (Universidad Norbert Wiener). He is also a distinguished professor for the postgraduate programme in nursing (Universidad Norbert Wiener), an adjunct professor in the College of Graduate Health Studies (A.T. Still University). Dr. Palmieri completed a two-year postdoctoral programme in Caring Science at the Watson Caring Science Institute. In addition, he earned a doctoral degree in global health (A.T. Still University), a postgraduate diploma in evidence-based health care (University of Oxford), a doctoral certificate in nursing science (Duke University), Ed.S. in educational technology (University of Missouri), postgraduate certificate in teaching (University of Pennsylvania), M.S.N. in acute care nurse practitioner (Vanderbilt University), M.B.A. in leadership and B.A. in management (Saint Leo University), and an A.A. in liberal arts (Pasco-Hernando State College). In addition, he completed three fellowships: Information technology fellow (Duke Health System); Executive fellow in patient safety (Virginia Commonwealth University), and Health administration fellow (Avera Health). Dr. Palmieri was the first Peruvian inducted into the American Academy of Nursing and awarded the prestigious Fellow Ad Eundem of the Royal College of Surgeons in Ireland, Faculty of Nursing and Midwifery.