Empowerment by Participation in Online Support Groups for Patients with Arthritis, Fibromyalgia and Breast Cancer

Cornelia van Uden-Kraan*, Institute for Behavioural Research, University of Twente, Enschede, The Netherlands
Constance Drossaert , Institute for Behavioural Research, University of Twente, Enschede, The Netherlands
Erik Taal , Institute for Behavioural Research, University of Twente, Enschede, The Netherlands
Erwin Seydel , Institute for Behavioural Research, University of Twente, Enschede, The Netherlands
Mart van de Laar, Institute for Behavioural Research, University of Twente, Enschede, The Netherlands

Track: Research Track
Presentation Topic: Consumer empowerment, patient-physician relationship, and sociotechnical issues
Presentation Type: Oral presentation
Submission Type: Single Presentation

Building: MaRS Centre
Room: Auditorium
Date: 2008-09-05 11:00 AM – 12:30 PM
Last modified: 2008-11-06

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Background: Ever since the rise of online support groups much is expected of the potential empowering effect of participation for patients [1]. Although many have pointed at this empowering effect [2, 3, 4, 5], little empirical evidence exists for how patients feel empowered.
Objectives: We explored if and how people with arthritis, fibromyalgia and breast cancer feel empowered by their participation in online support groups. In addition, we were interested which processes that take place in online support groups contribute to these outcomes.
Methods: We sent a posting with a link to an online questionnaire to 19 online patient support groups. The questionnaire included questions on demographics, use of the support group, empowering processes (exchanging information, finding recognition, sharing experiences, encountering emotional support and helping others) and empowering outcomes (being better informed, feeling more confident in the relationship with their physician, improved acceptance of the disease, feeling more confident about the therapy, enhanced self-esteem, enhanced social well-being and increased optimism and control). All items concerning the outcomes had the format of a statement that began with 'Through my participation in online support groups...'. Scores on all scales ranged from 'not empowered' (1) to 'very empowered' (5). In total 528 participants responded to the request to fill in the survey (23% arthritis, 22% fibromyalgia, 41% breast cancer).
Results: The majority of the respondents were women (n=494) with a mean age of 44 years (SD 10.4 years). The respondents were diagnosed 5 years ago on average (SD 5.9 years). The respondents felt empowered in several ways by their participation. With the exception of 'increased optimism and control' all scale scores for empowering outcomes were above 3.1. No significant differences in empowering outcomes between diagnostic groups were found. The empowering outcome that was experienced to the strongest degree, was 'being better informed'. For example, in total 74% of the patients had the feeling that they had the right knowledge to manage their illness. The empowering outcomes 'feeling more confident in the relationship with their physician', 'increased acceptance of the disease', and, 'feeling more confident about the therapy' were experienced to the same degree. The participants indicated, for example, that they knew better which questions to ask their physician (61%). For many respondents, participation in an online support group enabled easier acceptation of the disease (47%) and helped them to 'open up' about their disease (55%).
The empowering outcomes could only be partially predicted by the processes. The most important predictors of the outcome 'being better informed' appeared to be 'exchanging information' and 'finding recognition'. In total, 31% of the variance could be explained. The most important predictors of the outcome 'enhanced social well-being' appeared to be 'encountering emotional support' and 'sharing'. In total, 30% of the variance could be explained.
Conclusions: This study showed that participation in online support groups can make a valuable contribution to the empowerment of patients. Healthcare providers should acquaint their patients with the existence of online support groups and with the benefits that participation in these groups can offer.
[1] Ferguson T. Health online and the empowered medical consumer. Joint Committee Journal on Quality Improvement 1997;23(5):251-257.
[2] Shaw B, McTavish F, Hawkins RP, Gustafson D, Pingree S. Experiences of women with breast cancer: exchanging social support over the CHESS computer network. Journal of Health Communication, 2000;5(2):135-149.
[3] Sharf BF. Communicating breast cancer on-line: support and empowerment on the internet. Women & Health 1997;26(1):65-84.
[4] Høybye MT, Johansen C, Tjørnhøj-Thomsen T. Online interaction. Effects of storytelling in an internet breast cancer support group. Psycho-Oncology 2005;14(3):211-220.
[5] Barak A, Boniel-Nissim M, Suler J. Fostering empowerment in online support groups. Computers in human behavior 2008:doi:10.1016/j.chb.2008.02.004.

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