‘I don’t think I really realised how different the ‘new normal’ would be’—a qualitative study with cancer survivors to inform the development of survivorship centres

Many people experience a wide range of health and wellbeing issues after cancer, which could be addressed by various supportive care services. The purpose of this study was to identify the needs of cancer survivors and carers by exploring their personal experiences and access to these services to inform planning for a cancer survivorship centre in Sydney, Australia. Semi-structured interviews with patients who had completed active treatment and carers were conducted. A thematic analysis of the interviews was undertaken. Three main themes were identified from 40 interviews: access to support, supportive care services and irreversible impact on life. The access to support theme identified various facilitators and barriers that participants experienced in accessing services, particularly the lack of awareness about available services. The supportive care services theme highlighted a range of physical, psychological and social/practical services which were critical for addressing needs, and the importance of carers’ involvement with services. The irreversible impact on life theme underscored the permanent changes that participants experienced, both positive and negative, as a result of having cancer. The life-altering changes patients experience after cancer should be taken into consideration alongside service development. The study outcomes of patients’ and carers’ needs and experiences can influence the range of services and expertise considered to be integrated as part of cancer survivorship centres in similar settings. Implementing these recommendations may improve the uptake of supportive care services, self-empowerment, and patients’ wellbeing.