Bridging the Gap: A Qualitative Exploration of the Unmet Support Needs Among Care Partners for Individuals with Parkinson’s Disease

Research Objectives: To investigate the unique burdens and unmet support needs of PD care partners in Southwestern Ontario and explore perspectives on care needs throughout the PD journey from diagnosis to end-of-life. This study aims to explore the support needs, psychosocial implications, and day-to-day experiences of caregiving from the care partners' perspectives in Southwestern Ontario. Overall this research aims to enhance supports and develop recommendations for novel care partner resources.

Design: The interviews examined experiences with diagnosis, daily caregiving activities, perceptions of existing resources, and the physical, social, and psychological impacts of caregiving. The study also explored barriers and facilitators to participation, methods for personalizing programs, and suggestions for future programming and resources. Thematic codebook analysis was used. Distinct codes were refined and finalized using Nvivo 14, organizing the data into overarching themes.

Setting: Participants were recruited from across the general community of Southwestern Ontario. The researchers are situated at the University of Western Ontario.

Participants: Semi-structured interviews were conducted with 19 care partners (7 male; 12 female) of individuals with PD. One care partner supported an individual with early onset Parkinson’s Disease; 18 care partners supported individuals with Parkinson’s Disease who were older than 50 years. Participants ranged in age, education level, occupation, and years providing care.

Interventions: N/A

Main Outcome Measures: N/A

Results: Findings highlight care partners' perspectives on support needs from diagnosis through disease progression to post-mortem. Just as PD is a complex, multifaceted disease, the care partner supports needed are diverse and require tailoring to support the specific needs of each care partners’ context and dynamic. The study identifies critical areas where care partners require support such as navigating intimacy, difficult conversations around driving cessation, balancing work with the responsibilities of caregiving, travelling with PD, and planning for the future. This study illuminates the facilitators, and barriers care partners face in resource utilization and accessibility.

Conclusions: This research lays the foundation for enhancing care partner resources, including support groups, educational series, and online tools. More broadly, it seeks to provide recommendations for developing an evidence-based, comprehensive resource, such as a blended (online and in-person) education program tailored to care partner needs. Addressing unmet support needs can minimize burden experienced, enhance resilience, and potentially delay the need for government-funded home care or premature institutionalization. By better equipping care partners, this research aspires to improve the quality of life for both care partners and individuals with PD.

Author(s) Disclosures: The authors do not have any conflicts of interest to disclose.