Empowering processes in online support groups among people living with HIV/AIDS: A comparative analysis of ‘lurkers’ and ‘posters’

Abstract

The proliferation of online support groups provides an opportunity for individuals living with HIV/AIDS to obtain support online. The present study aimed to explore how different levels of participation in online support groups are associated with empowering processes and outcomes for individuals living with HIV/AIDS. A total of 340 individuals living with HIV/AIDS were recruited. They completed an online questionnaire consisting of measures on satisfaction with online support groups, empowering processes, self-care self efficacy, loneliness, optimism, coping, depression, and health-related quality of life. Results revealed that compared to posters, members who only read the messages (lurkers) scored lower in receiving social support and receiving useful information in empowering processes, and lower in satisfaction with their relationship with group members. They also scored higher in distraction and lower in planning in the brief COPE. In addition, they scored lower in social function and higher in energy. There were no significant differences in self-care self efficacy, loneliness, depression, or optimism between posters and lurkers. Our results suggest that lurking in the online support groups may be as empowering as reading and posting messages to the groups. More research is needed to identify the long term effects of online support group use.

Introduction

Human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) is a chronic, life-threatening illness that is replete with physical and psychosocial challenges. People living with HIV/AIDS not only are affected physically by the illness, they also experience psychological distress in the management of their illness, and stigmatization and social isolation due to concealment of their serostatus and rejection from important others. The complexity of the HIV infection, together with the many psychosocial challenges in coping with their disease, has increased the need for information and social support for individuals living with HIV/AIDS (Bogart et al., 2000, Vance, 2006, Ware et al., 2006).

In the context of HIV/AIDS, research shows that the provision of social support is associated with various positive outcomes including higher immune function (Burgoyne, 2005), more use of active coping strategies (Simoni, Frick, & Huang, 2006), more effective disease management (Luszczynska, Sarkar, & Knoll, 2007), better quality of life (Bastardo and Kimberlin, 2000, Gielen et al., 2001, Hall, 1999) and improved psychological health (Gielen, McDonnell, Wu, O’Campo, & Faden, 2001). While the beneficial effects of face-to-face social support are well documented, a number of barriers have been identified which may limit the extent to which individuals living with HIV/AIDS can access or receive support. For example, unavailability of family members, the death of friends to AIDS, lack of acceptance, feeling stigmatized and isolated, not wanting to be a burden on family, mobility limitations, or non-disclosure of HIV status are all widely documented barriers to social support (Schrimshaw et al., 2003, Serovich et al., 2000, Smith and Rapkin, 1996). It has also been reported that many individuals with HIV/AIDS have unmet needs and insufficient social support available to them (Kadushin, 1999, Serovich et al., 2000).

The recent proliferation of computer technology and Internet provide an opportunity to address the needs of individuals living with HIV/AIDS. Indeed, it has been argued that online support groups “open a door for people who would not ordinarily reach out for help”, (Wellman & Gulia, 1999, p. 173). It has been suggested that due to the removal of geographical and temporal barriers, individuals with mobility-related difficulties find participating in online support group especially helpful (Eastin and LaRose, 2005, Fullmer and Walls, 1994, White and Dorman, 2001). Furthermore, individuals living with conditions which are considered embarrassing or stigmatising may regard online support groups as a safer environment in which to discuss sensitive issues (Buchanan and Coulson, 2007, Coulson and Knibb, 2007, Davison et al., 2000, Pereira et al., 2000). Therefore, online support groups might be a useful and convenient venue where individuals living with HIV/AIDS can obtain support and express their emotions.

To date, studies in the context of online support groups have mainly focused on the functions and processes that take place in online support groups, and the effectiveness of online support group participation in helping promote positive psychosocial outcomes for patients. It has been suggested that the special mechanisms that operate and the processes that take place in the dynamics of online support groups may generate a sense of personal empowerment (Barak et al., 2008, Tanis, 2007). For example, provision of access to a wealth of up-to-date information (Idriss et al., 2009, Turner et al., 2001, Walther and Boyd, 2002), sharing of emotions and personal experiences, and provision of social support (Barak et al., 2008, Buchanan and Coulson, 2007, Coursaris and Liu, 2009, Mo and Coulson, 2008, Reeves, 2001) have been the most widely documented processes enacted in online support groups. In addition, engagement with online support groups has a range of empowering effects including improved social and emotional well-being, improved quality of life, and more active coping (Broom, 2005, Lieberman et al., 2003, Mo and Coulson, 2009, van Uden-Kraan et al., 2009, Zabinski et al., 2004) Recently, Van Uden-Kraan and colleagues (van Uden-Kraan, Drossaert, Taal, Seydel, & van de Laar, 2008) studied the empowering processes and outcomes of online support group participation for individuals with somatic disease and found that participation promoted empowerment in various ways. In particular, the empowering processes of online support groups documented included exchanging information, encountering emotional support, finding recognition and understanding, sharing experiences and helping others. The empowering outcomes indentified included feeling better informed, feeling more confident in the relationship with their physician, improved acceptance of the illness, feeling more confident about the treatment, increased optimism and control over the future, enhanced self-esteem, and enhanced social well-being (van Uden-Kraan et al., 2009). Nevertheless, it is unclear whether these empowering processes and effects could be generalised to participation in HIV/AIDS online support groups.

Two types of user engagement within online support groups have been identified within the literature. Thus far, the majority of work which has considered the potential benefits of participation within online support groups has done so with a focus on those who actively post messages (‘posters’). However, within most online support groups, these messages are posted by a relatively small number of group members (Nonnecke & Preece, 2000a). In contrast, many other group members may read messages but do not themselves post messages to the group (‘lurkers’) and may represent a significant proportion of the online support group membership (Katz, 1998, Nonnecke and Preece, 2000b). While the proportion of lurkers tends to vary considerably depending on the nature of the specific group, Nonnecke and Preece estimated that on average 45.5% of the membership of health-related online support groups may be ‘lurkers’ (Nonnecke & Preece, 2000a). Little is known, however, about the experiences of those who are considered lurkers within health-related online support groups as compared with those who actively post messages.

How ‘lurking’ should be defined is a controversial issue. For example, whereas some studies have defined lurkers as people who have not posted to an online group in the past 3 months (Nonnecke, 2000, Nonnecke and Preece, 2000a) others have defined lurkers as those who have never posted to an online group (Nonnecke, Andrews, & Preece, 2006). Moreover, descriptions of lurkers and their online behaviour appear to vary within the literature. For example, some studies have described lurkers as “free-riders” and consider lurking as a negative behaviour (Kollock & Smith, 1996), whilst others view lurking in a much less negative way. Indeed, online support groups may welcome lurking behaviour because they recognise the need for a new member to understand the dynamics of the group (Nonnecke & Preece, 2000b). Lurking can also be a very desirable behaviour in large groups as it would minimise repetitive questions and message overloading (Nonnecke & Preece, 1999).

Empirical evidence suggests that lurking is a highly active, methodical, and goal-driven process and may be a means of satisfying a set of user-defined goals related to joining an online group (Nonnecke, Preece, Andrews, & Voutour, 2004). Moreover, it has been suggested that lurkers’ and posters’ motives for joining online support groups may be different. Whilst both lurkers and posters may be attracted to online support groups as a means of obtaining information, posters’ attractions to the online support group appear to be more focused on community interactions, such as to enjoy oneself, to build professional relationships, to participate in conversations, to make friends, and to obtain empathic support (Nonnecke et al., 2006). Consequently, the extent to which lurkers and posters may be satisfied with their online support group experience may vary. Lurkers tend to benefit less than they expected, are less satisfied with their online support group experiences, and are less likely to consider themselves as members of the groups (Nonnecke, Preece, & Andrews, 2004). For example, in a study by Van Uden-Kraan et al. (van Uden-Kraan et al., 2008) lurkers felt significantly less satisfied with their online support group experience compared to posters, and felt less empowered in the process of exchanging information and finding recognition. However, not all studies report a significant difference between lurkers and posters, suggesting that both lurkers and posters might benefit from online support group participation to a similar extent. For instance, the study by van Uden-Kraan et al. (van Uden-Kraan, Drossaert, Taal, Seydel et al., 2008) failed to find a significant difference between lurkers and posters for most of the empowering outcomes assessed. This is consistent with the evidence that lurkers may indeed develop a sense of community by simply following the conversational threads (Maloney-Krichmar and Preece, 2005, Nonnecke, 2000, Nonnecke and Preece, 2001). Clearly, further research is required to examine whether, and how, the experiences of lurkers and posters differ.

There is a growing body of literature which suggests that participating in online support groups might be beneficial to individuals living with chronic conditions. To date, however, there has been little investigation of the effects of lurking within an online support group. Whether posters and lurkers might feel empowered to the same extent and in the same ways through online support group participation has been inconsistent and therefore warrants further investigations. In addition, it is not clear if the emerging literature on the levels of user engagement and impact on empowering processes and outcomes can be generalised to the HIV/AIDS context. More research is needed to explore the empowering effects of online support group participation, and the difference between lurkers and posters in their level of empowerment for individuals living with HIV/AIDS. Given that lurkers make a significant proportion in many online support groups, understanding how lurking might be beneficial to lurkers would be invaluable for health care professionals and would help them decide whether or not they should encourage those who lurk within HIV/AIDS online support groups to take a more active role through posting messages.

The present study aims to explore whether differences exist between lurkers and posters in their use of HIV/AIDS-related online support groups, their experience of empowering processes, their satisfaction with online support groups, and a range of empowering outcomes as measured by self-care self-efficacy, loneliness, optimism, coping, depression, and health-related quality of life. These outcomes were selected for analysis as they have been the most widely documented psychological outcomes related to online support group use thus far in the literature.