Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers.

Chris Allen,Anne Kennedy,Ivaylo Vassilev,Anne Rogers

doi:10.2196/jmir.5260

Abstract

BackgroundRecent years have seen an exponential increase in people with long-term conditions using the Internet for information and support. Prior research has examined support for long-term condition self-management through the provision of illness, everyday, and emotional work in the context of traditional offline communities. However, less is known about how communities hosted in digital spaces contribute through the creation of social ties and the mobilization of an online illness “workforce.”ObjectiveThe aim was to understand the negotiation of long-term condition illness work in patient online communities and how such work may assist the self-management of long-term conditions in daily life.MethodsA systematic search of qualitative papers was undertaken using various online databases for articles published since 2004. A total of 21 papers met the inclusion criteria of using qualitative methods and examined the use of peer-led online communities for those with a long-term condition. A qualitative meta-synthesis was undertaken and the review followed a line of argument synthesis.ResultsThe main themes identified in relation to the negotiation of self-management support were (1) redressing offline experiential information and knowledge deficits, (2) the influence of modeling and learning behaviors from others on self-management, (3) engagement that validates illness and negates offline frustrations, (4) tie formation and community building, (5) narrative expression and cathartic release, and (6) dissociative anonymity and invisibility. These translated into a line of argument synthesis in which four network mechanisms for self-management support in patient online communities were identified. These were (1) collective knowledge and identification through lived experience; (2) support, information, and engagement through readily accessible gifting relationships; (3) sociability that extends beyond illness; and (4) online disinhibition as a facilitator in the negotiation of self-management support.ConclusionsSocial ties forged in online spaces provide the basis for performing relevant self-management work that can improve an individual’s illness experience, tackling aspects of self-management that are particularly difficult to meet offline. Membership in online groups can provide those living with a long-term condition with ready access to a self-management support illness workforce and illness and emotional support. The substitutability of offline illness work may be particularly important to those whose access to support offline is either limited or absent. Furthermore, such resources require little negotiation online because information and support is seemingly gifted to the community by its members.

Highlights

Population aging has resulted in an increased prevalence of long-term conditions, which has resulted in increased expenditure on the provision of care for those affected [1,2]
These translated into a line of argument synthesis in which four network mechanisms for self-management support in patient online communities were identified
These were (1) collective knowledge and identification through lived experience; (2) support, information, and engagement through readily accessible gifting relationships; (3) sociability that extends beyond illness; and (4) online disinhibition as a facilitator in the negotiation of self-management support

Summary

Introduction

Population aging has resulted in an increased prevalence of long-term conditions, which has resulted in increased expenditure on the provision of care for those affected [1,2]. Self-management has become an increasingly important paradigm in health care delivery and the promotion of self-management of long-term conditions is an enduring feature of health care policy [3,4,5,6]. Recent research has begun examining the social context of long-term condition self-management and, the role of others in shaping and supporting self-management practices [1,7,9,10]. Prior research has examined support for long-term condition self-management through the provision of illness, everyday, and emotional work in the context of traditional offline communities. Less is known about how communities hosted in digital spaces contribute through the creation of social ties and the mobilization of an online illness “workforce.”

Methods

Results

Discussion

Conclusion