Objective: The objective of the focus group study was to gain insight into the role of informal and formal resources in supporting caregivers of people with Parkinson’s disease (PD) from around the world as well as to learn about the influence of culture, including cultural views of health and illness, on the caregiver role.

Background: Parkinson’s disease impacts physical, social, emotional and financial aspects of life for not only the person diagnosed with the disease but also for their care partner. As part of the 5^th World Parkinson Congress (WPC) held in Kyoto, Japan (June 2019), the Care Partner Lounge provided a rare and unique venue for exploring the perspectives and experiences of care partners from around the world.

Method: Upon registration for the WPC, attendees who identified as caregivers were informed of the focus group study, invited to participate and to provide selection criteria information (age, gender, primary language, length of time caregiving, country of origin). The demographic information was used to create three balanced focus groups: two in English and one in Japanese. Recruitment also occurred on site. During the one hour focus group meeting, the group facilitators guided the participants through a uniform set of questions and scribes recorded the responses. A follow up email was sent three weeks later to capture any additional comments as well as a follow up survey one year later. Transcripts were analyzed by two reviewers.

Results: The three focus groups were comprised of fifteen participants (ages 48-76). Participants included fourteen spouses and one adult child representing eight countries. The length of caregiving spanned one to fifteen years. Significant themes emerged including the ability to help as a satisfying aspect of the caregiver role, communication as the largest challenge in caregiving and obtaining support as an invaluable coping strategy for providing care.

Conclusion: Caregivers of people with PD from different countries share similar satisfying and challenging experiences. Due to the small sample size of this project, research is needed to further investigate this generalization and to better understand any differences among caregivers with a goal to inform clinical practice.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/caregiving-in-parkinsons-disease-an-international-perspective/