Shining a light: Active participation in a mental health Internet support group

Abstract

Internet Support Groups (ISGs) are a valued and popular source of health information and support among consumers and carers. Although ISGs are premised upon mutual help, it has been observed that only a small minority of users, of the order of 1%, are responsible for the majority of activity. Despite their potential importance to the outcomes and sustainability of online groups, little is known about the characteristics of these participants or the nature of their participation.

This thesis comprises a systematic review of the literature on styles of participation in ISGs followed by a series of five empirical studies focusing on the nature of participation in a Mental Health Internet Support Group (MHISG). These studies sought to address fundamental gaps in our knowledge regarding active participation in an MHISG, posing the questions: ‘Who participates?’, ‘With whom do they communicate?’, ‘What do they communicate about?’ and ‘How do these factors differ as a function of user engagement?’. These questions were addressed using log data generated by all active users (n=2932) of the MHISG ‘BlueBoard’ and a mixture of qualitative and quantitative methods including novel analyses, such as social network modularity and topic modelling algorithms.

It was found that the demographic characteristics of higher- and lower-engaged users were broadly similar, although the members of the higher-engaged group were older and more likely to identify as consumers. Network analysis demonstrated users communicated with each other in a pattern that resembled five generational cohorts transcending disorder-specific subforums, in which the highest-engaged users of each cohort were central and registered earlier than the majority of other users. Topic modelling and qualitative content analysis revealed the content of the communications of the two groups differed. The communications of higherengaged users appeared to reflect a consumer model of recovery and those of lower-engaged users a medical model of recovery. However, higher-engaged users modified the content of their responses when communicating with lower-engaged users. Qualitative analysis of users’ initial posts revealed higher- and lower-engaged users differed in terms of their ‘awareness’ characteristics at the outset of participation, with higher-engaged users demonstrating greater interpersonal-, mental health- and self-awareness.

Based on these findings, this thesis presents ‘The Tripartite Model of MHISG Participation’ which, contrary to prevailing assumptions, posits that differences in posting frequency are associated with different styles of active participation across the spectrum of engagement. The higher end comprises a minority group of users—referred to as ‘mutual helpers’—who are central, aware and proactive about participating in peer support for their ongoing recovery. At the lower end, the majority of users, referred to as ‘active help seekers’ and ‘active help providers’, participate in transient and asymmetrical exchanges, often with ‘mutual helpers’. Those who do not post are ‘passive followers and help seekers’. The model is iterated for each cohort. In addition to extending our scientific knowledge base, and informing the above new model of user participation, these findings are of potential relevance to the design of future research studies, managers of Internet support groups and policy makers. Show more