Therapeutic Affordances of Online Support Group Use in Women With Endometriosis
Open accessAbstract
BACKGROUND: The Internet has provided women living with endometriosis new opportunities to seek support online. Online support groups may provide a range of therapeutic affordances that may benefit these women. OBJECTIVE: To examine the presence of therapeutic affordances as perceived by women who use endometriosis online support groups. METHODS: Sixty-nine women (aged 19-50 years, mean 34.2 years; 65.2% (45/69) United Kingdom, 21.7% (15/69) United States) participated in a Web-based interview exploring online support group use. Participants had been using online support groups for an average of 2 years and 4 months (range = 1 month to 14 years, 9 months). Responses were analyzed using inductive thematic analysis. RESULTS: The analysis revealed 4 therapeutic affordances related to online support group use: (1) "connection," that is, the ability to connect in order to support each other, exchange advice, and to try to overcome feelings of loneliness; (2) "exploration," that is, the ability to look for information, learn, and bolster their knowledge; (3) "narration," that is, the ability to share their experiences, as well as read about the experiences of others; and (4) "self-presentation," that is, the ability to manage how they present themselves online. The associated outcomes of use were predominantly positive, such as reassurance and improved coping. However, a number of negative aspects were revealed including the following: concerns about the accuracy of information, arguments between members, overreliance on the group, becoming upset by negative experiences or good news items, and confidentiality of personal information. CONCLUSIONS: Our findings support the previously proposed SCENA (Self-presentation, Connection, Exploration, Narration, and Adaptation) model and reveal a range of positive aspects that may benefit members, particularly in relation to reassurance and coping. However, negative aspects need to be addressed to maximize the potential benefit of support groups. Some of these can be addressed relatively easily through making privacy policies clearer, including health professionals to moderate content, and structuring forums to encourage the sharing of positive stories.
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Online support groups can be asynchronous or synchronous, providing a range of therapeutic benefits similar to face-to-face support groups.
“Online support groups can be asynchronous or synchronous, providing a range of therapeutic benefits that are similar to face-to-face support groups [10,11]”
From Telehealth Interventions Delivering Home-based Support Group Videoconferencing: Systematic Review (2018) · cites this paper as [10]
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Telehealth Interventions Delivering Home-based Support Group Videoconferencing: Systematic Review
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- Authors
- Shoebotham, A., & Coulson, N. S.
- Affiliations
- University of Nottingham (GB)
- Corresponding author
- Coulson, Neil S
- Venue
- Journal of Medical Internet Research
- Publisher
- JMIR Publications Inc.
- Published
- 2016-05-09
- Volume
- 18
- Issue
- 5
- Pages
- e109
- ISSN
- 1438-8871 (ISSN-L)
- PMC
- PMC4877503
- OpenAlex
- W2345813792
- Cited by
- 99
- References
- 42
- Citations by year
- 2026: 9 · 2025: 13 · 2024: 12 · 2023: 14 · 2022: 10 · 2021: 12 · 2020: 10 · 2019: 4 · 2018: 7 · 2017: 8
- FWCI
- 11.78
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- Journal of Medical Internet Research (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Repository@Nottingham (University of Nottingham) (submittedVersion, cc-by)
- University of Birmingham Research Portal (University of Birmingham) (submittedVersion, cc-by)
- Nottingham ePrints (University of Nottingham) (submittedVersion, cc-by)
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Health Sciences › Medicine › Reproductive Medicine › Endometriosis Research and Treatment
- Social Sciences › Health › Social Media in Health Education
- Keywords
- endometriosis, online support groups, self-presentation, social connectedness, information seeking, experience sharing, coping, reassurance, confidentiality, women's health
- MeSH terms
- Adaptation, Psychological, Adult, Endometriosis, Female, Health Services, Humans, Middle Aged, Self-Help Groups, United States, Disease Management, Internet, Qualitative Research, Young Adult
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