Background Following completion of hospital based treatment breast cancer patients often feel isolated and abandoned and report a lack of information and support to address their recovery needs. Feedback from service users at Breast Cancer Care identified a need for a resource at the end of breast cancer treatment. In collaboration with our Service User Research Partnership (SURP) group we set about designing and delivering this study.
Aims To develop a resource for breast cancer survivors based on their identified unmet information and support needs and user feedback.
Methods A qualitative mixed method approach:
▶ Two Focus groups with 12 women at the end of hospital based treatment.
▶ Telephone interviews of 12 healthcare professionals.
▶ Reconvened focus groups and email review of healthcare professionals to critique a prototype resource.
Results Resource content was informed by the conceptual framework developed from interview analysis which identified a process of reconciliation – ‘reflection’, ‘isolation’, ‘loss of self’ and ‘moving forward in life’. Participants wanted a comprehensive resource that could be individually tailored and includes self management strategies Real-life experiences of patients, signposting to other resources and usefulness over time were also considered important.
Conclusion This is the first information resource for breast cancer survivors in the UK. It has considerable potential to improve the experiences of many living with breast cancer. Further, it will assist healthcare professionals in the care of their patients at the transition from active treatment to survivorship. SURP involvement has strengthened the quality of the research.
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