Group affiliation in self‐management: support or threat to identity?

Abstract

BackgroundSelf‐management is considered important in chronic illness, and contemporary health policy recommends participation in support groups for individuals with chronic conditions. Although withdrawal from or non‐participation in support groups is an important problem, there is limited knowledge about individuals' own motivation for participation in or withdrawal from self‐management support groups.ObjectivesTo investigate how individuals with type 2 diabetes perceive participation in group‐based self‐management support.DesignThis is a qualitative focus group study using a semi‐structured interview guide.Setting and participantsSixteen participants diagnosed with type 2 diabetes were included in the study. Individuals with and without group affiliations were mixed in three focus groups to trigger discussions. In the analysis, reoccurring themes of engagement and discussions between participants were focused within a theoretical frame of institutional logic. The focus groups are seen as social spaces where participants construct identity.ResultsBoth participation and non‐participation in group‐based self‐management support are associated with dealing with the stigma of having type 2 diabetes. Negotiations contribute to constructing an illness dignity as a response to the logic of moral responsibility for the disease.Discussion and conclusionContemporary policy contributes to societal understandings of individuals with type 2 diabetes as morally inadequate. Our study shows that group‐based self‐management support may counteract blame and contribute in negotiations of identity for individuals with type 2 diabetes. This mechanism makes participation in groups beneficial for some but stigma inducing for others.

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“…While this may be difficult to address, more research is needed to ascertain the needs and experiences of these participants. Bossy et al [77], in a recent study looked at attendees and non-attendees of group diabetes programmes and found a divergence between those wanting to be with similar others and those who formed an identity around coping on their own. This is an important new line of inquiry that requires further exploration.…”

Development of an mHealth platform for HIV Care: Gathering User Perspectives Through Co-Design Workshops and Interviews

“…Continued exchange among peers is important for individuals to feel less alone while engaging in chronic illness self-management and to generate knowledge that is based on personal experiences [35]. However, frequent interaction with peers may often not be feasible because of spatiotemporal limitations or fears of stigmatization in face-to-face environments.…”

Moving between ideologies in self‐management support—A qualitative study

“…The group‐based approaches vary in content and may include a mix of the following group pedagogic measures: expert‐patient tutoring; discussions between leaders and participants; educational components; and content such as nutrition advice and physical activities, the latter of which could be described as a lifestyle‐oriented approach . The Norwegian structure of group‐based support ranges from public, professionally led groups to private nonprofit layperson‐driven groups, and local physical activity and nutrition programmes may be both professionally and layperson‐driven . In other countries, self‐management support is primarily based on initiatives from volunteer and patient organizations …”