Through the Eyes of the Care Partner: Daily Experiences Living With a Person With Parkinson's Disease

RESEARCH QUESTION: What are the activity experiences of family care partners living with people with Parkinson’s disease (PD)?

RATIONALE: PD is a neurodegenerative disorder that affects individuals with PD and their family care partners. Previous research has focused on the activities and outcomes of caregiving for PD. Rarely has this research addressed the activities of care partners beyond the role of caregiving. The purpose of this study was to understand the variety of frustrating and satisfying activities experienced by care partners. Understanding this experience will guide client-centered occupational therapy practice that includes both the person with PD and his or her care partner.

DESIGN: This qualitative study, using grounded theory and content analysis methods, analyzed transcripts of interviews with care partners describing recent satisfying and frustrating activities. Transcripts were a subset of data from a larger mixed-methods longitudinal study (Tickle-Degnen et al., 2014).

PARTICIPANTS: Participants were the primary family care partners (all spouses) who were coenrolled with qualifying community-living, English-speaking participants with idiopathic PD (Hoehn & Yahr Stages 2–4, 60–80 yr old, scoring ≥26 on the Mini-Mental State Examination). Fifteen care partner transcripts from baseline, 6-mo, and 1-yr interviews were analyzed.

METHOD: During three time periods, responses to questions about a recent frustrating and satisfying activity from in-person interviews were analyzed. Two researchers analyzed each transcript using NVivo 10, a qualitative data management program.

ANALYSIS: Data were analyzed through grounded theory and content analysis, and triangulation occurred with questionnaires about social support, roles, and activity participation. Initial codes were generated from current literature, and additional codes arose from the data. A coding manual provided consistency between researchers. Researchers discussed and came to a mutual consensus when discrepancies in coding occurred. When new codes emerged, the coding manual was updated, and changes were recorded in a process log. Researchers then reviewed and recoded previously coded transcripts as needed. Finally, the coding was analyzed to understand emerging themes.

RESULTS: When talking about activities, care partners described a variety of occupations, strategies, and attitudes that crossed several areas of occupational performance. Major themes that emerged included (1) occupations: caregiving and beyond; (2) changing roles; (3) self-management strategies; (4) formal and informal support; (5) burden vs. benefit; and (6) compassion and concern.

DISCUSSION: Findings provide a snapshot of the lives of care partners of people with PD. By understanding care partners’ occupations, strategies, and attitudes, occupational therapy (OT) practitioners will have the tools to facilitate care partner engagement in meaningful activities. Supporting care partner health and well-being will benefit the person with PD.

IMPACT STATEMENT: These findings provide support for the role of OT with care partners of people with PD. Identifying available social support, addressing changing roles, exploring coping strategies, and discussing ways for the care partner to continue engaging in valued occupations may promote caregiver resilience.

References

Tickle-Degnen, L., Saint-Hilaire, M., Thomas, C. A., Habermann, B., Sprague Martinez, L. S., Terrin, N., . . . Naumova, E. N. (2014). Emergence and evolution of social self-management of Parkinson’s disease: Study protocol for a 3-year prospective cohort study. BMC Neurology, 14, 95. http://dx.doi.org/10.1186/1471-2377-14-95