What is the role of online support from the perspective of facilitators of face-to-face support groups? A multi-method study of the use of breast cancer online communities

Abstract

Objective: To explore the role of online communities from the perspective of breast cancer survivors who are facilitators of face-to-face support groups. Methods: Seventy-three attendees (73% response rate) of a Canadian support group-training program completed a questionnaire examining when and why they used online communities. A purposive sample of 12 respondents was interviewed on how they used them in comparison to traditional supportive care. Survey responses were analyzed using descriptive statistics, and interview transcripts using a descriptive interpretive approach. Results: Online communities were used by 31.5%, mostly during treatment (73.9%), daily or weekly (91.3%), primarily for information (91.3%) and symptom management (69.6%) and less for emotional support (47.8%). Reasons for non-use were lack of need (48.0%), self-efficacy (30.0%), trust (24.0%), and awareness (20.0%). Respondents used online communities to address unmet needs during periods of stress and uncertainty. A multi-theory framework helps to explain the conditions influencing their use. Conclusion: Online communities have the potential to fill gaps in supportive care by addressing the unmet needs of a subgroup of breast cancer survivors. Further research is required among typical cancer survivors. Practice implications: Online communities could play an important role as a supplemental resource for a sub-group of breast cancer survivors.