Care partner needs in Parkinson's disease: A systematic review of qualitative and quantitative data.

Background: Care for persons with Parkinson's disease (PD) is to a great extent carried out by care partners. It is important to understand their needs to ease their burden and help with their important role.

Objective: To present (1) what is known about needs in caregiving for someone with PD from both qualitative and quantitative papers; and (2) to identify research gaps in the existing literature to guide future research.

Methods: A systematic search was conducted, searching PubMed, CINAHL, PsychINFO, and MEDLINE for both qualitative and quantitative studies examining care partner needs in Parkinson's disease published from the start of the databases up to 13 November 2024. The best-fit framework synthesis method was employed for qualitative data extraction and analysis. The Critical Appraisal Skills Programme (CASP) and the Newcastle-Ottawa Scale (NOS) were used for quality assessment of studies.

Results: Forty-eight qualitative studies, ten quantitative studies, and three mixed methods studies met the eligibility criteria. All studies were of observational, cross-sectional design. A total of nine themes (the need for information, the need to be heard, PD healthcare, emotional support, daily living, financial support, skills, care partner physical well-being, and respite care) were identified from qualitative data and all quantitative data could fit this framework. Quantitative data on the frequency of needs and when they arise over the course of PD were scarce. Only one quantitative study made use of a validated measurement instrument to measure care partner needs, the Family Needs Questionnaire.

Conclusions: Care partner needs in PD are wide-ranging. A significant gap identified is the absence of quantitative data to determine the prevalence, timing, and factor contributing to the needs revealed by the qualitative research.