Social support in cyberspace: A content analysis of communication within a Huntington's disease online support group

Abstract

Objective

Huntington's disease (HD) is an inherited disorder, characterized by a progressive degeneration of the brain. Due to the nature of the symptoms, the genetic element of the disease, and the fact that there is no cure, HD patients and those in their support network often experience considerable stress and anxiety. With an expansion in Internet access, individuals affected by HD have new opportunities for information retrieval and social support. The aim of this study is to examine the provision of social support in messages posted to a HD online support group bulletin board.

Methods

In total, 1313 messages were content analyzed using a modified version of the social support behavior code developed by [Cutrona CE, Suhr J. Controllability of stressful events and satisfaction with spouse support behaviors. Commun Res 1992;19:154–74].

Results

The analysis indicates that group members most frequently offered informational (56.2%) and emotional support (51.9%) followed by network support (48.4%) with esteem support (21.7%), and tangible assistance (9.8%) least frequently offered.

Conclusion

This study suggests that exchanging informational and emotional support represents a key function of this online group.

Practice implications

Online support groups provide a unique opportunity for health professionals to learn about the experiences and views of individuals affected by HD and explore where and why gaps may exist between evidence-based medicine and consumer behavior and expectations.

Introduction

In recent years, there has been a proliferation of health-related information on the Internet. Moreover, many websites offer communication features, which have facilitated the development of online support groups across a variety of chronic illnesses and conditions [1]. These groups are quickly becoming one of the most frequently accessed resources on the Internet. For example, a recent survey undertaken by Pew Internet research institute [2] revealed that at least 36 million people in the USA were members of online support groups. These groups function by enabling individuals to engage in supportive interaction through bulletin boards, chat rooms, list-serves, and individual email exchanges with others facing similar issues, challenges, or problems.

Commentators have established that there are a number of advantages of such groups [1], [3], [4], [5]. First, they are not restricted by the temporal, geographical, and spatial limitations typically associated with face-to-face groups so individuals can send and receive messages at any time of the day or night. Second, the participant is able to carefully consider their message and develop it at their own pace before posting it to the group. Third, online support groups may bring together a more varied range of individuals offering diverse perspectives, experiences, opinions, and sources of information than might otherwise be the case. Fourth, participation in an online support group allows a greater degree of anonymity than face-to-face groups. Such anonymity may facilitate self disclosure and help individuals in discussing sensitive issues more easily or to give opinions with less fear of embarrassment or judgement than in more traditional face-to-face groups [6], [7], [8].

Although it has been noted that little is known about the nature of online social support [1], there has recently emerged a growing body of research on this topic. A number of these studies have included content or thematic analyses of existing messages on online bulletin boards [4], [9], [10], [11]. Results from these studies suggest that the majority of messages on these boards include giving or receiving social support and that informational and emotional support are most prevalent [4], [9], [11]. However, most of this work has focused on relatively common chronic illnesses, with illness characteristics that are nominally familiar to the wider population (for example, diabetes and irritable bowel syndrome) [4], [9]. There are few studies, which focus on rare conditions that are not widely understood, such as Huntington's disease (HD).

Huntington's disease is an inherited neurological and degenerative condition, which is relatively rare (e.g. within the UK, prevalence is estimated at 1 per 10,000) [12]. It is characterized by movement disorder, cognitive deterioration, and affective disturbances. The mean age of onset for HD is 40 years (with some variation) and as yet there exists no cure, with treatments available being palliative or experimental and death occurring on average 15–17 years after onset [13]. Each child of a person, who has HD, carries a 50% risk of developing the disease and is typically referred to as “being at risk”. Such a state has often been described as living with an abiding sense of impending threat [14].

The development of a predictive test for HD in 1993 was highly significant for those families affected by HD [15]. The test can determine, prior to the appearance of any visible signs of the illness, whether the mutation is present. The decision to be tested is not necessarily straightforward as it presents a range of challenges not only for the individuals “at risk” but also many others (for example partners, children, and siblings). It has been noted that the results of the test carry with them profound implications for the future [16]. The need for certainty, to be able to plan for the future and to inform children are all commonly cited reasons by “at risk” individuals for decisions to undertake genetic testing [17].

For individuals who develop HD it is generally the immediate family that take on the responsibility of caring. Recent studies have shown that these informal carers frequently subordinate their own needs and quality of life to the needs of their loved ones [18], [19]. Moreover, stress and anxiety are common and emanate from their caregiving role [20], [21], [22], [23]. In addition, the symptoms and genetic nature of HD makes this carer role distinct from others [24]. Appropriate care is often hard to find and carers struggle to maintain their own identity, as the disease process takes over their lives as well as the life of their HD affected relative [25], [26]. Loneliness, a sense of loss and lack of support are all commonly observed [18].

Faced with this diverse range of challenges, and with the rise in popularity of online support groups, individuals affected by HD may be drawn to participate in these groups. However, little is known about the nature and type of social support exchanged in this context, and more widely across rare and poorly understood conditions.

The aim of this present study was to examine the provision of social support through a content analysis of messages posted to an online support group bulletin board for individuals affected by HD.