Development of a Self-management program in Empowering People with Parkinson`s disease: a qualitative study using a co-creation framework

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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 PD and making informed decisions about their treatment options. Aim 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 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) and health care professionals/other stakeholders (n = 10) 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 Home™) during the program. Conclusion This study provides knowledge about developing an individualized, 8-week self-management program tailored PwP using a co-creation framework. Further, in-depth knowledge about everyday life and specific needs when living with PD, were identified.

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