Self-Management Program Participation and Social Support in Parkinson's Disease: Mixed Methods Evaluation

ABSTRACT

Aims: To explore the potential influence of the Stanford Chronic Disease Self-Management Program (CDSMP) on social support in Parkinson's disease (PD). Methods: This was a quasi-experimental mixed methods design. Volunteers with PD (n = 27) and care partners (n = 6) completed the CDSMP, questionnaires of social support and self-management outcomes, and an interview about social support in relation to CDSMP participation. PD participants (n = 19) who did not participate in the CDSMP completed the questionnaires for quantitative comparison purposes. Results: Regarding the quantitative data, there were no significant effects of CDSMP participation on social support questionnaire scores; however, there were some positive correlations between changes in social support and changes in self-management outcomes from pre- to post-CDSMP participation. Three qualitative themes emerged from the interviews: lack of perceived change in amount and quality of social support, positive impact on existing social networks, and benefit from participating in a supportive PD community. Conclusions: Although participants did not acknowledge major changes in social support, there were some social support-related benefits of CDSMP participation for PD participants and care partners. These findings provide a starting point for more in-depth studies of social support and self-management in this population.

KEYWORDS:

• Social support
• self-management
• Parkinson's disease
• caregiving

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the article.

Funding

This study was supported by NIH (K23HD071059), the Program in Occupational Therapy at Washington University School of Medicine in St. Louis, the Greater St. Louis Chapter of the American Parkinson Disease Association (APDA), and the APDA Center for Advanced PD Research at Washington University in St. Louis.