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

Abstract

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.

The neglected importance of hope in self-management programs – a call for action

“…studies of optimism in disease selfmanagement) does exist within the general illness, the chronic disease literature and, to a less extent, the chronic disease education/ self-management literature. While not talking specifically about 'hope', a number of studies have shown that participants experience reduced isolation as a result of the social connections established through participation in a chronic disease self-management program 3,9,10,17 . Some of our own work and other research suggest that meeting others with the same disease legitimizes participants' illness experiences and enables them to find role models.…”

Patient Self-Management In Chronic Heart Failure — Establishing Concordance Between Guidelines And Practice

“…Indeed, research suggests that the link between patient confidence and selfcare 1,34 may depend on the quality of the patient-health professional relationship. 35 However, problematic patient-physician interactions continue to be among the most commonly reported barriers to patient self-management, 36 e-health strategies will likely form a pivotal role in addressing these shortfalls. Trials in progress, such as PROMETHUS37, BEAT-HF 38 and CHF-CePPORT 39 will examine whether e-health platforms can overcome patient barriers, such as cognitive impairment, to improve self-management in CHF.…”

Implementation and evolution of a regional chronic disease self-management program

“…As well, focus groups were held with patients in order to gauge their reactions to the program in more detail and capture the types of community and health resources they used and how often they used them. 22 The Ottawa Hospital…”

“…22 Participants also experienced several common barriers to successful self-management, the most frequently cited of which were poor patient-physician communication, long wait times to see specialists and lack of access to allied health professions. An examination of the resource surveys suggested that after attending the workshop respondents increased their use of community resources such as dieticians, health food store staff, the Internet and bookstores.…”