Nurturing health-related online support groups: Exploring the experiences of patient moderators

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Abstract

The aim of this study was to examine the views of moderators across a diverse and geographically broad range of online support groups about their moderator experiences and to explore both the personal benefits as well as challenges involved. Thirty-three patient moderators completed an online questionnaire which included a series of open-ended questions. Thematic analysis identified three themes: emergence, empowerment, nurturing. Several moderators declared their own diagnosis and for some, being able to share personal insights motivated them to establish the group and in turn offered validation. They felt empowered by helping others and learned more about the condition through accessing the “communal brain”. Some felt the group aided patients’ access to health services and their ability to communicate with health professionals while others worried about them becoming over-dependent. Moderators described needing to nurture their group to ensure it offered a safe space for members. Clear rules of engagement, trust, organisation skills, compassion and kindness were considered essential. Patient moderated online support groups can be successfully developed and facilitated and can be empowering for both the group member and moderator alike.

Highlights

► Patient moderated online support groups can be successfully developed and facilitated. ► Being a moderator can be personally empowering. ► Volunteer moderators may benefit in similar ways online support group members.

Introduction

As access to the Internet has dramatically increased, particularly in the last decade (Internet World Stats, 2012), individuals living with a range of health-related problems have found new opportunities to come together for the purposes of information and advice sharing as well as mutual support (Powell et al., 2003, Walther and Boyd, 2002). Furthermore, a number of unique characteristics of Internet-mediated communication have arguably underpinned a rise in the popularity of online support groups (White & Dorman, 2001). For example, online support groups are not limited by geographical or temporal restrictions as might be the case for a face-to-face group (Braithwaite, Waldron, & Finn, 1999). In addition, there is the potential for a much larger and diverse group composition (Wright & Bell, 2003), which in turn allows members to potentially access a wider variety of information, advice and support (Coulson & Knibb, 2007). Online support group members may also benefit from being able to disclose personal information (Suler, 2004) and discuss sensitive or embarrassing issues (Buchanan & Coulson, 2007) with less fear of judgment or risk (Caplan, 2003, Wright, 2000) as well as being able to develop more supportive relationships as a result of reduced visible social status cues, such as age, gender or ethnicity (King and Moreggi, 1998, Madara, 1997).

To date, the vast majority of studies which have considered online support groups have sought to examine the online experiences of members either by analysing the nature of the communication which takes place (Blank, Schmidt, Vangsness, Monteiro, & Santagata, 2010) or by asking them directly (e.g. Letorneau et al., 2012). This work has revealed a number of potentially important therapeutic processes which may benefit members and has been cited as evidence for the efficacy of health related online support groups (Coulson & Malik, 2012). For example, members have been shown to be more informed, more in control, better able to accept and manage their illness, more confident in communicating with health professionals as well as experiencing improvements in self-esteem and general well-being (Bartlett and Coulson, 2011, Mo and Coulson, 2012, van Uden-Kraan et al., 2008, Wright and Bell, 2003). However, online support groups are not without their limitations. For example, incorrect or misleading information, member conflict and disagreements, reading “horror” stories as well as the absence of physical connections with other members have all been described as having a negative impact on group members (Attard and Coulson, 2012, Esquivel et al., 2006, Han and Belcher, 2001, Hoybye et al., 2005, Malik and Coulson, 2010).

To date, little attention has been given to understanding the factors which may contribute to the success (or not) of online support groups during the course of their existence. For example, the challenges of setting up and facilitating member interaction in a newly established group may differ from the challenges from groups which have been in existence for a longer period of time. One avenue through which we may explore the possible contributory factors underpinning the success (or not) of an online support group is through engaging with those individuals (usually patients) who moderate it. To date, there has been limited attention given to exploring the views of health-related online support group moderators and their role and function. One exception is that of van Uden-Kraan, Drossaert, Taal, Seydel, and van de Laar (2010) who interviewed 23 Dutch patients involved with three types of health-related online support group (i.e. breast cancer, fibromyalgia and arthritis), about their motives for setting up a support group and online experiences. The findings described how group moderators had a range of intrinsic as well as altruistic motives for starting an online group. In addition, a range of factors were identified in the process of setting up and initiation of an online support group. Whilst this study is important in helping explore the views of moderators, the range of groups included is limited to only three types of physical illness, restricted to the Dutch context and does not include representation from groups addressing mental health problems. As a consequence, these issues may limit the extent to which we can generalise across different types of support groups as well as understanding the processes important in helping shape the online support group once it has been initially set up.

The aim of this study was to examine the views of moderators across a diverse and geographically broad range of online support groups about their moderator experiences and to explore both the personal benefits as well as challenges involved.

Section snippets

Procedure

Participants to the study were recruited through individual invitations sent on behalf of the research team. Those moderators who wished to participate in the study were directed to an online questionnaire hosted by SurveyMonkey (an online survey and questionnaire tool), where they were provided with detailed information about the nature of the project and their rights as a research participant. In order to proceed, participants had to give their consent to be part of the study. In addition,

Results

Results are reported by theme with verbatim data extracts which describe the experience and life cycle of the online forum from the moderators’ perspectives. Themes identified are emergence, empowerment, and nurturing.

Discussion

The aim of this study was to examine the views of moderators of a range of health-related online support groups about their moderator experiences and to explore both the personal benefits as well as challenges involved in undertaking their role.

Our findings describe a range of altruistic motives which appear to underpin the decision to become a moderator and to support the group and its members. It was common for group moderators to personally value the opportunity to both offer support to

References (34)

  • S.E. Caplan

    Preference for online social interaction: A theory of problematic internet use and psychosocial well-being

    Communication Research

    (2003)
  • N.S. Coulson et al.

    Coping with food allergy: Exploring the role of the online support group

    Cyber Psychology and Behavior

    (2007)
  • N.S. Coulson et al.

    Health-related online support communities

  • A. Esquivel et al.

    Accuracy and self correction of information received from an Internet breast cancer list: Content analysis

    British Medical Journal

    (2006)
  • H.R. Han et al.

    Computer-mediated support group use among parents of children with cancer: An exploratory study

    Computers in Nursing

    (2001)
  • M.T. Hoybye et al.

    Online interaction effects of storytelling in an internet breast cancer support group

    Psycho-oncology

    (2005)
  • Internet World Stats. <http://www.internetworldstats.com/stats.htm>. August,...
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