Sandaunet, A. (2008). The challenge of fitting in: Non-participation and withdrawal from an online self-help group for breast cancer. Sociology of Health & Illness, 30 (1), pp. 131 – 144 Retrieved April 5, 2011 from: http://www.ub.uit.no/munin/bitstream/handle/10037/1727/article.pdf?sequence=1
This article argues that while social support can be an advantage to users of online support groups for breast cancer, it also poses as a disadvantage. To undergo this research, 40 women were asked to use an online support group forum to discuss breast cancer related subjects such as their own personal health. Over 15 months 1,034 messages were made on the forum where women shared their stories and supported each other. But, of the 40 women chosen for the research, 29 did not participate. After conducting interviews with these individuals it was found that the biggest reason for non-participation was the sad stories being shared. These stories made some users feel more afraid of their disease and death. Other reasons for non-participation included thinking they were not being ill enough, the challenge of finding a legitimate position on the group, busy schedules and lack of motivation to participate. Considering these hindrances is an important step when creating an online support group for breast cancer or any disease.
Owen,
This article argues that support associated with online discussion groups for women with breast cancer provide similar results to professional face-to-face and online interactions with a physician. This study randomly selected 62 women diagnosed with breast cancer to participate in an online self-guided internet support group for 12 weeks. Interviews were conducted after the 12 weeks and 82% of the women reported that the discussion forum was helpful to them. The results showed a greater improvement in health status for a majority of the women. Expressions of sadness but not anxiety or fear resulted in greater quality of life for participants while expressions of anxiety and overall negative affect improved overall well-being. This study shows that online self-help groups for breast cancer is an acceptable alternative to face-to-face support groups and that individuals that cannot attend face-to-face support group meeting should be directed to available internet groups.
The Canadian Cosmetic, Toiletry and Fragrance Association Foundation. (2010) Lives affected by cancer: 800 women speak. Retrieved April 5, 2011 from: http://www.facingcancer.ca/wp-content/uploads/2011/03/CCTFA-Foundation-Report-800-Women-Speak-ENGLISH-FINAL-COPY_Dec-2010.pdf
This report argues that women living with breast cancer are in need of psychosocial support and that the path to better quality of life for these women is through treating them as a whole person, not just a body with an illness. The Canadian Cosmetic, Toiletry and Fragrance Association Foundation conducted a survey of 814 women with breast cancer to better understand their needs. Only half of respondents felt that they were supported during their cancer journey and they said that the support gave them an optimistic outlook. Of that half of respondents, only a quarter of those respondents felt supported after five years of their journey. Many of these women find it difficult to ask for support because of age, culture, income and geography barriers. These women relish in opportunities to share their experience and stories with others in hopes of making a positive impact on the people around them. Of the women surveyed, 73% of them use cancer related sites for information and support but only 15% of women use face-to-face support groups. Clearly, there is an opportunity here for online breast cancer support groups to fill the gap between the women who are already online and the women who want psychosocial support.
Article to Buy
Lieberman, M. & Goldstein, B. (2005). Self-help on-line: An outcome evaluation of breast cancer bulletin boards. Journal of Health Psychology, 10(6), 855-862. Retrieved April 5, 2011 from: http://hpq.sagepub.com/content/10/6/855.abstract
Goldstein & Lieberman (2005) provide an evaluation of the effects of online support groups on women with breast cancer specifically focusing on psychological health. Participants (N=114) filled out online questionnaires upon beginning participation in an online support group and after participating for six months. Questionnaires measured post-traumatic growth (quality of life), depression, and psychosocial well-being. Improvements were recorded in all areas. While results are obviously not generalizable, combined with previous studies, this paper has tremendous implications given the accessibility of online support groups. It provides researchers with a basic framework for empirically evaluating the effectiveness of these support groups.
