The WPC Care Partner Lounge, first experienced at WPC 2016 in Portland, expanded its program offerings at WPC 2019 in Kyoto and added a research component with a Care Partner focus group study as it provided a rare and unique venue for exploring the perspectives and experiences of care partners from around the world!  The intention was that by exploring the similarities and differences in the caregiving experiences through an international lens, insights would be gained into the role of informal and formal resources in supporting caregivers, the influence of culture on the roles caregivers play and on the different views of health and illness. What was gained far surpassed that original research intention. Those who joined the focus group gained so much more including a sense of mutual support, community and validation for the important role they play in the lives of people with Parkinson’s disease.

Upon registering for WPC 2019, people who identified as care partners were told about the focus group study and asked to indicate their interest in participating. The response was overwhelming and after balancing groups to represent care partners of different ages, stages and countries, three groups were formed totalling 15 people between the ages of 48-76 years, having provided care for between 1- 15 years and representing 8 different countries.

And now the results are in!  The most satisfying aspects of caregiving were being together and being helpful and the biggest challenge faced was in the area of communication. Family support and maintaining one’s hobbies were most helpful in coping and more support from family/friends as well as the opportunity for care partner self-care were identified as being the most important in meeting the care partners’ ongoing needs. The collective pieces of advice offered to new care partners was to find support and to spend time together while maintaining a “seize the day” philosophy. Regarding the impact of culture on the care partner’s role, it became apparent that overall, a care partner is a care partner no matter what country you live in. Despite actually speaking different languages, they are all speaking the same language.

There were laughs and there were tears as care partners shared their stories with many memorable quotes including “I can bring something positive to her wellbeing…giving her better moments and better days is gratifying” and “Lots of bad things happen but it’s how you respond that dictates your outlook.”

One year later, participants completed a survey reflecting on how attending the focus group impacted their care partner experience in the past the year. Those responses again highlight the value and benefits of bringing together a community of like-minded people with comments such as ”I felt that my experiences were similar to those of others in the group” and “This focus group enhanced my understanding of my partner and an appreciation of his/her life with PD” and “Thank you for this opportunity…it was the highlight of WPC for me!”

We, the focus group study team, thank the WPC for this amazing opportunity and are grateful to the care partners for sharing so openly their stories, concluding WPC 2019 in a most special way.

Elaine Book, MSW, RSW, is the Center Coordinator and Clinic Social Worker for the Pacific Parkinson’s Research Centre, a PF Center of Excellence, at the University of British Columbia in Vancouver, Canada. She has coordinated the WPC Care Partner Lounge in 2016 and 2019 and currently since on the Care Partner Planning Committee for WPC 2022.

Outcomes shared on behalf of the WPC 2019 Care Partner Lounge Focus Group Study team:
Allison Allen, Elaine Book, Rachael Dawson, Lissa Kapust, Lucie LaChance, Jess Mckenzie, Mayura Ueda, Adam Yu.

Ideas and opinions expressed in this post reflect that of the author solely. They do not reflect the opinions or positions of the World Parkinson Coalition®