Jacqueline L Bender1, Joel Katz, Lorraine E Ferris, Alejandro R Jadad. 1. Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada; Centre for Global eHealth Innovation, University Health Network, Toronto, ON, Canada; ELLICSR: Centre for Health, Wellness and Cancer Survivorship, University Health Network, Toronto, ON, Canada. Electronic address: jbender@ehealthinnovation.org.
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.
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.
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