The impact of an online Facebook support group for people with multiple sclerosis on non-active users.

Jacqui Steadman,Chrisma Pretorius

doi:10.4102/ajod.v3i1.132

Abstract

BackgroundMultiple sclerosis (MS) is a debilitating disease and there is little research on support networks for people with MS (PwMS). More specifically, most studies on online support groups focus on those who actively participate in the group, whereas the majority of those who utilise online support groups do so in a passive way.ObjectivesThis study therefore aimed to explore the experiences of non-active users of an online Facebook support group for PwMS. Emphasis was placed on the facilitators and the barriers that were associated with membership to this group.MethodAn exploratory qualitative research design was implemented, whereby thematic analysis was utilised to examine the ten semi-structured interviews that were conducted.ResultsSeveral facilitators were acquired through the online support group; namely emotional support (constant source of support, exposure to negative aspects of the disease), informational support (group as a source of knowledge, quality of information) and social companionship (place of belonging). Some barriers were also identified; namely emotional support (emotions lost online, response to messages, exposure to negative aspects of the disease), informational support (information posted on the group, misuse of group) and social companionship (non-active status)ConclusionThese findings demonstrate that the non-active members of the online support group for PwMS have valid reasons for their non-active membership status. More important, the findings suggest that the online Facebook support group provided the group members with an important support network in the form of emotional support, informational support and social companionship, despite their non-active membership status or the barriers that have been identified.

Highlights

Multiple sclerosis (MS) is a chronic inflammatory and degenerative disease that affects the central nervous system (CNS) (Boeschoten et al 2012)
This stimulates exploration and consideration of additional explanations and perspectives at different stages of data collection and analysis (Long & Johnson 2000). This method was utilised by discussing and comparing ideas, methods, and findings with the project leader throughout the research process. It was evident from the interviews with the participants that, despite differences in the duration of membership of the online support group as well as variation in the time elapsed since MS diagnosis, there were several themes that appeared to be common across the experiences of participants
The results of this study were interpreted according to the model of functional support which comprises of five types of support (Sherbourne & Stewart 1991)

Summary

Introduction

Multiple sclerosis (MS) is a chronic inflammatory and degenerative disease that affects the central nervous system (CNS) (Boeschoten et al 2012). Though psychological treatment assists individuals to physically and mentally cope with MS, it has been found that social support assists individuals to cope emotionally (Pretorius & Joubert 2014; Schwartz & Frohner 2005). Social support is an important resource for those with MS, as it often increases self-esteem, decreases depression and increases quality of life (Pretorius & Joubert 2014; Schwartz & Frohner 2005). The apparent lack of research on suitable support networks for PwMS, such as peer support groups, is concerning, since the disease has such a debilitating impact on the lives of so many individuals. Multiple sclerosis (MS) is a debilitating disease and there is little research on support networks for people with MS (PwMS). Most studies on online support groups focus on those who actively participate in the group, whereas the majority of those who utilise online support groups do so in a passive way

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