The work of obtaining breast cancer care and support: a realist-informed qualitative study of equity in access

Abstract Background People affected by breast cancer may need clinical, psychological and practical support throughout treatment and follow-up. Receiving help does not show the work needed to obtain it or whether it meets continuing needs. We examined how patients’ and families’ work, resources and relationships with services shaped obtaining care and support, and the implications for equity in access. Methods Four online focus-group sessions were conducted in two rounds during May–June 2025 within the Costs and Supportive Care in Breast Cancer study. Sixteen people participated: fourteen people with breast cancer and two family carers; nine attended both rounds. Realist-informed analysis compared circumstances, available resources and participants’ interpretations with their actions and reported service responses. English policy and guidance informed consideration of service implications. Results Participants described repeated calls, correction of errors and coordination across services. Money, occupational knowledge and relatives’ initiative enabled particular actions, but employment and caring responsibilities restricted available help. Within individual accounts, pursuing one concern could coexist with holding back from another, and greater confidence with exhausting vigilance. Assistance sometimes transferred work to professionals or welfare advisers, who completed tasks and retained information for later requests. This could leave the processes generating repeated work unchanged. Support could also be useful yet poorly matched to continuing needs: one participant wanted therapy spread over a longer period, while another reported that chemotherapy was working but that its side effects and continuing support needs received too little attention. Conclusions Access needs to be assessed through the response obtained, the work required to secure it and the fit of support over time. Dependence on personal resources raises equity concerns, although these accounts do not establish population inequalities. Six proposed service functions identify responsibilities that services could assume while preserving patients’ chosen involvement. Their feasibility, safety and equity effects require evaluation.