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

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.

Women Caring for Husbands Living with Parkinson's Disease: A Phenomenological Study Protocol.

Parkinson's disease (PD) is an emerging pandemic caused by aging, longevity, and industrialization. Most people diagnosed with PD initially experience mild symptoms, but over time the symptoms become debilitating. Given their intensive care requirement, most married people living with PD receive care from their spouses; most are female caregivers. Because caregiving is hard work with long hours, caregivers experience stress, fatigue, and depression, often leading to exhaustion and burnout. The purpose of this descriptive phenomenological study is to understand the lived experience of women caregivers of husbands living with PD. As part of this study protocol, women caring at home for their husbands diagnosed with PD will be purposely recruited from the Colorado Parkinson Foundation. Semi-structured interviews will be conducted by Zoom© until data saturation is achieved. Colaizzi's seven-step process will be used to analyze the data in Atlas.ti. Strategies have been incorporated into the study protocol to maximize trustworthiness and to insure methodological rigor. The study will be reported using recommendations from the Standards for Reporting Qualitative Research and the Consolidated Criteria for Reporting Qualitative Research. Findings from this study may guide intervention development to improve the caregiving experience and to inform clinical practice guidelines for health care professionals.