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Who talks? The social psychology of Illness support groups

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Abstract

More Americans try to change their health behaviors through self-help than through all other forms of professionally designed programs. Mutual support groups, involving little or no cost to participants, have a powerful effect on mental and physical health, yet little is known about patterns of support group participation in health care. What kinds of illness experiences prompt patients to seek each other's company? In an effort to observe social comparison processes with real-world relevance, support group participation was measured for 20 disease categories in 4 metropolitan areas (New York, Chicago, Los Angeles, and Dallas) and on 2 on-line forums. Support seeking was highest for diseases viewed as stigmatizing (e.g., AIDS, alcoholism, breast and prostate cancer) and was lowest for less embarrassing but equally devastating disorders, such as heart disease. The authors discuss implications for social comparison theory and its applications in health care.
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... Examples of self-help groups available for groups anonymously through CMC are addicts, victims of abuse, individuals with diseases and other ailments (Kling et al., 1999). According to Davison, Pennebaker and Dickerson (2000) CMC users are more motivated to communicate anonymously due to anxieties or uncertainties they may feel in face-to-face communication, especially when the individual has an embarrassing illness, disfiguring ailment or any other stigma. Another aspect of anonymous communication that explains its usage is its availability for users to avoid persecution. ...
... "It has provided me a constructive way to interact with others, as I am normally not very social" (Member interview, March 27, 2008). Research has shown that for people like this the Internet proves to be better for interaction outcomes in comparison to traditional media like face-to-face interaction (Bargh & McKenna, 2004;Davison et al., 2000;McKenna & Bargh, 1998). ...
Thesis
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This thesis applies Anderson and Meyer's (1988) theory of social action media studies to examine whether social action occurs offline as a result of controversial topics discussed in online communities. One example of this is the blog PostSecret.blogspot.com. PostSecret is an Internet blog that encourages viewers around the world to mail in personal secrets in the form of a postcard for online posting. The blog potentially supports the development of social action through its allowance for open discussion of controversial and socially taboo topics. A hybrid media analysis will incorporate an ethnographic study, online discussion forum and semiotic analysis. Currently, the communication field has extensive scholarship regarding online community building, the impact of such on local community building, online community communication methods and other facets of online communities; however there remains limited scholarship on the offline actions that occur in response to controversial or socially taboo discussions that develop within online communities.
... This lends support to Goffman's (1963) theory -people with social stigma tended to make a homogeneous group sharing a similar stigma. This tendency -patients, having been embarrassed, tend to participate in 'mutual' self-help groups -has also been reported in the USA (Davison et al. 2000). ...
Thesis
p>The main research question is to investigate how perceptions of information provision are associated with the Quality of Life. Three studies were conducted, with participants being recruited from self-help groups in Japan. First a symptom checklist and physical discomfort scale in lymphoedema was developed. Test-retest reliability and the internal structure of the scale were investigated by a prospective study. Second, a qualitative study was conducted in order to explore perceptions of lymphoedema and how they were formed in the society. A dual analytic approach was applied to primary transcripts: thematic analysis and conceptual analysis using symbolic interactionism. Based on the findings of the conceptual analysis, a psycho-social discomfort scale was developed. Psychometric properties were investigated. The WHO QoL-BREF Japanese version was used to check criterion validity in a cross-sectional survey study. Test-retest reliabilities of the check list and physical discomfort scale were acceptable. Perceptions of information provision at diagnosis and loss of strength were associated with reported discomfort. The qualitative analysis revealed cognitive and emotional processes in breast cancer and lymphoedema. Experiences of lymphoedema were often interpreted in breast cancer contexts. The third study showed that the "breast cancer" subscales of the psycho-social discomfort scale had good internal consistency, and good convergent and divergent validity. However, the lymphoedema subscales had a weak internal structure. ‘Perceptions of information provision’ were associated with the ‘resources to live with breast cancer’ subscale. In conclusion, the validity of the symptom checklist, physical discomfort scales and breast cancer subscales were acceptable. Since the lymphoedema subscales had a weak internal structure, further work is needed in the development of the measure.</p
... Examples of self-help groups available for groups anonymously through CMC are addicts, victims of abuse, individuals with diseases and other ailments (Kling, 1999). Davison et al. (2000) also point out that anonymous CMC users are more motivated to communicate anonymously due to anxieties or uncertainties they may feel in face-to-face communication, especially when the individual has an embarrassing illness, disfiguring ailment or any other stigma. Another aspect of anonymous communication that explains its usage is its availability for users to avoid persecution; for example, revolutionaries or protestors against repressive governments, individuals with varying sexual preferences in certain areas of the world, or writers publishing documents that are potentially harmful by the document's content or group it's targeting (government or corporate organizations) (Marx, 1999). ...
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Preprint
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