Empower-PD: Development of A Self-Management Program in Empowering People with Parkinson’s Disease: A Qualitative Study Using A Co-Creation Framework

Background: Empowerment of People with Parkinson`s disease (PwP), involves providing the individuals with the knowledge,
resources, and support they need to take an active role in managing their consequences of Parkinson`s disease (PD) and making informed decisions about their treatment options. Objective: Using a co-creation framework, this study aimed to develop a self-management intervention in collaboration with PwP, relatives and cross-sectoral health care professionals to empower the affected individuals and mitigate the consequences of the disease. Method: This explorative qualitative study used a co-creation framework and content analysis to develop a self-management program. A workshop and two focus group interviews with PwP (n =6), caregivers (n = 3), health care professionals (n=7), other stakeholders (n=3) informed the development process. Results: A 8-week self-management program was developed providing 5 teaching sessions with specific themes, 1 home visit by a PD-nurse for action planning, goal setting and motivational interviewing, development of a personal goal-setting tool (“PD GOAL”), mindfulness-sessions, and objective monitoring of motor symptoms via the Parkinson KinetiGraph Watch (PKG At HomeTM) during the program. Conclusion and Practical implications: This study provides knowledge about developing an individualized, 8-week
self-management program tailored PwP using a co-creation framework. The self-management program is currently being tested in an intervention study.