Aim: To understand the value of metastatic support groups, starting with metastatic breast cancer (MBC), and factors influencing their adoption, implementation and sustainment including system/organisational factors.
Methods: We performed a scoping review of impact and implementation of metastatic support groups. This informed our interviews with people with MBC, male partners, group facilitators and key informants. Data were analysed thematically and discussed by project team, including three consumers. Implementation determinants were identified using Consolidated Framework for Implementation Research.
Results: The review (19 studies: 8 RCTs; 7 qualitative; 2 cohort; 2 mixed-methods) identified evidence of effectiveness of metastatic support groups, particularly psychosocial outcomes. Eighty-three participants were interviewed (28 patients; 16 partners; 20 support group facilitators; 19 key informants). Cross-cutting themes included importance of metastatic support groups and professional facilitation given high MBC patient/partner unmet needs and unique survivorship challenges. MBC patient/partner and facilitator data indicated support groups provided much-needed connection to MBC community, safe space for sharing experiential knowledge and having open conversations. Key implementation challenges included suitably skilled group facilitators, access to clinical supervision, and sustainable funding models. Key informant data indicated systemic challenges including lack of national framework to inform standards, model-of-care and delivery of groups. The ‘corporatisation’ of many not-for-profits, the increasingly risk-averse culture, insecure funding streams, and need to demonstrate impact has seen a shift from delivery of face-to-face services such as support groups to mass-reach, online services (e.g. helplines, online forums) which are more easily evaluated and reported as impactful.
Conclusion: There was strong agreement across datasets that metastatic support groups, particularly face-to-face groups, were of value and that they should be led by trained professional facilitators. Equitable access to metastatic support groups will require a national framework/model-of-care and cooperation among stakeholders to utilise their expertise in metastatic cancer, support group leader training, and supportive care delivery.