Meade, Oonagh
(2013)
Members’ experiences of a neuromuscular disorder online support group.
PhD thesis, University of Nottingham.
Abstract
Introduction: Neuromuscular disorders (NMDs) cause wasting and weakening of muscles. People affected by NMDs and their carers can experience a number of adverse psychosocial consequences, which can be exacerbated by the rare nature of many of these disorders. This makes access to medical information, timely diagnoses, supportive care and peer support difficult. Options for receiving peer support are increasing through the development of online support groups (OSGs) for people affected by NMDs.
Aims: This thesis examined the role of a new OSG in facilitating online peer support for people affected by NMDs and their carers. This was carried out using two distinct, but inter-related, studies. The first study examined the various ways in which members used the message board facility. The second of these studies accessed members’ personal experiences of using this OSG.
Methods: In order to examine how members used this new OSG, the first study involved an inductive thematic analysis of OSG message postings. Message postings from the first five months of this OSG’s existence (n=1,914) were analysed, so as to identify the main thematic content of members’ discussions.
The second study accessed participants’ personal accounts of their OSG experiences. Semi-structured interviews were conducted with six OSG members and were analysed using Interpretative Phenomenological Analysis (IPA). This interview element examined the context through which members decided to use the group, factors that contributed to their continued use of the group, and the personal impact of participation.
Results: The OSG message postings analysis demonstrated how members created a sense of community spirit by establishing common ground through disclosing personal information, searching for connections with people with similar illness experiences or interests, welcoming new members, and sharing aspirations for the development of a resourceful community. Experiences, emotional reactions and support were shared in relation to: delayed diagnosis; symptom interpretation; illness management and progression; and the sense of isolation incurred when managing a rare disorder. The board was also used to discuss societal and political issues pertaining to living with an NMD and methods of raising awareness of such conditions.
The results of the interview study showed the valued connection that the OSG gave participants to similar others, in a friendly, non-pressurised environment. Members especially valued the reassurance of knowing that they were not alone in coping with their often-rare condition. The group provided participants with an understanding audience: a rare experience for a group whose condition is not widely known or understood. The information exchanged on the OSG was appreciated due to its specificity in dealing with NMDs. The board was also considered an important platform for raising awareness of NMD-related issues. The gratifying experience of helping other NMD sufferers was highlighted as a key theme.
Participants also felt that the OSG was not without its limitations. Difficulties in relating to other people (because of varying disability levels, different disease progression histories, and different views on politics and other interests) influenced participants’ levels of interaction and the perceived benefits of the group. Less common concerns for the group – but important for some individuals – were privacy concerns in using a publicly accessible group and difficulty navigating through the message postings.
Conclusions: This thesis provides a novel, in-depth insight into how people used a new OSG for NMDs, and the personal impact of participating in such a group. Analyses of message posting and interview data highlight the vital psychosocial support provided by the OSG, especially given the rarity of many of these conditions. However, it was found that some obstacles to support are inherent in the OSG itself, tempering assessments of the impact of its use.
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