Coping with Illness Online: The Case of Patients'Online Communities

This article identifies and analyzes characteristics of patients' online communities (POC) in Sweden. Using a qualitative approach, it presents a fine-grained picture of the communities covering both the structural and cultural factors. Acknowledging the debate about quality of health information online and the potential risks of e-health, the article argues that a deeper understanding of the dynamics of POC, which offer unique aides for the coping process of chronically ill patients, can contribute to the design of the emergent forms of Internet-based health care resources.

keywords:

• coping
• design
• health information
• information technology use
• individuals
• Internet
• online communities
• social support

Notes

In this article the concept of “online community” is defined in accordance with Preece (2000): “An online community is a group of people, who come together for a purpose online, and who are governed by norms and policies” (quoted in Sieckenius de Souza & Preece, 2004).

Although notions like “self-help groups” (Finn, 1999, p. 221) or “social support groups” protect (White & Dorman, 2001, p. 693) are sometimes used, the term patients' online communities (POC) is preferred in this article because it spells out the exact nature of the community that is the object of the study.

“POC” refers to both the singular and the plural forms of patients' online communities.

Although Scandinavian countries do not have the self-help tradition of Anglo-American countries (Kummervold et al., 2002), Swedish POC are a particularly valuable case study because Sweden and other Scandinavian countries have broad access to the Internet at workplaces as well as in households and public spaces (Sweden Statistics, 2004).

Throughout the article the term “initiator” is used synonymously with the term “owner,” both indicating a person who has created and manages a POC.

For a comprehensive reading of the model, see Baym (1995, 1998).

Baym refers to Reid (1991) on work of Internet relay chat (IRC), Myers (1987a, 1987b) for the study of BBSs (bulletin board systems), and Hellerstein (1985) on a study of a university-wide network.

“MS is the result of damage to myelin—a protective sheath surrounding nerve fibres of the central nervous system. When myelin is damaged, this interferes with messages between the brain and other parts of the body. For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern. For everyone, it makes life unpredictable,” (quote from http://www.mssociety.protect org.uk, accessed 30 May 2004).

“Coping strategies” here refer to the work by Richard S. Lazarus and Susan Folkman on how people act in stressful encounters (cf. Lazarus & Folkman, 1984) such as facing illness.

Since the research study was performed in Swedish, all quotes presented from the observations, the questionnaire, and the interviews were translated into English by the author.

These characteristics were revealed to the author in the questionnaires and during the interviews, although they were not specifically asked about.