Priorities to Improve Caregiving Experiences in Parkinson Disease: A Qualitative Study of Multiple Stakeholders

Parkinson disease (PD) and other Lewy body disorders are leading contributors to carer distress. In clinical settings, carer needs are not well understood or routinely discussed. When addressed, the focus tends to be on caregiver burden, a broad term that may limit clinicians' ability to provide meaningful support. This study aimed to investigate the priorities of key stakeholders, namely, persons with PD (PwP), informal unpaid carers such as spouses of PwP, and paid caregivers, to help facilitate the development of more targeted, holistic carer support.

Using a qualitative descriptive research design, virtual semistructured interviews and one focus group were conducted with PwP, informal unpaid carers, and paid caregivers. Data collection and analyses were iterative, and a thematic analysis of coded data was completed.

Participants included 10 PwP (60% female, 90% White), 8 informal carers (100% female, 87.5% White), and 6 paid caregivers (75% female, 50% White). Four themes on the perceptions of PD caregiving were identified that highlighted current caregiving priorities. (1) Prior discussions on caregiving roles and expectations are important. Conversations between PwP and carers on the carer's role and individual expectations of caregiving were recognized as foundational to optimal caregiving. (2) The minutiae of caregiving exacerbate caregiver burnout and strain. Routine caregiving tasks and lack of decision-making support contributed to carer burnout and PwP frustrations. (3) Asking for and receiving help with caregiving can be hard for carers and patients. While carers and PwP were reluctant to ask for help, paid caregivers encouraged strategies to do so. (4) Caring and love lie at the core of caregiving. The challenges of PD caregiving were offset by feelings of mutuality of love and care.

Focused discussions on carer roles and expectations are foundational to improving caregiving experiences. Providing support for these discussions in clinical settings, offering help, and intentionally shifting the focus from burden to the positive aspects of caregiving may foster purpose and resilience among PD carers. Future research should include perspectives of varied stakeholders engaged in providing and receiving care and explore clinical interventions to address carer priorities.