Therapeutic affordances and outcomes of online support groups: an online study of women with endometriosis

Abstract

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 which may benefit these women, therefore the present study seeks to explore these affordances. Methods: Sixty-nine women (aged 19 to 50 years; Mean = 34.2; 65.2% UK; 21.7% USA) participated in an online interview exploring online support group use. Participants had been using online support groups on average 2 years and 4 months (Range = 1 month to 14 years, 9 months). Responses were analysed using inductive thematic analysis. Findings: The analysis revealed 4 therapeutic affordances related to online support group use; i) “connection†i.e. the ability to connect in order to support each other, exchange advice, and to try to overcome feelings of loneliness; ii) “exploration†i.e. the ability to look for information, learn and bolster their knowledge; iii) “narration†i.e. the ability to share their experiences, as well as read about the experiences of others; and iv) “self-presentation†i.e. the ability to manage how they present themselves online. The associated outcomes of use were predominantly positive, such as reassurance and improved coping, with few negative aspects arising from online support group use. Discussion: The findings provide partial support for the SCENA model (Self-presentation, Connection, Exploration, Narration and Adaptation) proposed by Merolli et al., (2014) as ‘Adaptation’ was not revealed by participant responses. By considering the therapeutic affordances of online support group use, we can further understand the needs of women living with endometriosis.