The patient’s voice: an exploratory study of the impact of a group self-management support program

BACKGROUND: Given the potential value of self-management support programs for people with chronic diseases, it is vital to understand how they influence participants’ health attitudes and behaviours. The Stanford Chronic Disease Self-Management Program (CDSMP), the most well-known and widely studied such program, is funded in many provinces and jurisdictions throughout Canada. However, there is little published evidence on its impact in the Canadian health-care system. We studied participants’ reactions and perceived impacts of attending the Stanford program in one Ontario health region so we could assess its value to the health region. The study asked: What are participants’ reactions and perceived impacts of attending the Stanford CDSMP? METHODS: This mixed methods exploratory study held four focus groups approximately one year after participants attended a Stanford program workshop. At the beginning of each session, participants filled out a survey on the type and frequency of community and health resources used for their self-management. During the sessions, a moderator guided the discussion, asking about such things as long-term impact of the program on their lives and barriers to self-management of their chronic conditions. RESULTS: Participants perceived diverse effects of the workshop: from having a profound impact on one area to affecting all aspects of their lives. A change in physical activity patterns was the most prominent behaviour change, noted by over half the participants. Other recurrent effects included an improved sense of social connection and better coping skills. Barriers to self-management were experienced by almost all participants with several dominant themes emerging including problems with the health system and patient-physician interaction. Participants reported a wide variety of resources used in their self-management, and in some cases, an increase in use was noted for some resources. CONCLUSIONS: Self-management support is, at its core, a complex and patient-centred concept, so a diversity of outcomes to match the diversity of participants should be expected. As these interventions move into different target populations and communities, it is essential that we continue to explore through multiple research methods, the effects, and their meaning to participants, ensuring the optimal investment of resources for the very individuals these interventions aim to serve.