Being away from home for cancer treatment: a qualitative study of patient experience and supportive care needs during radiation therapy

Abstract

Introduction: Supportive care needs (SCN) refer to support required by patients and their families to better cope with cancer. Many rural radiation therapy (RT) patients stay away from home for significant periods, which can lead to the negative effects of both social isolation and cultural disparity. They may demonstrate complex SCN. This study aimed to explore experiences of being away from home by considering patient perspectives of their own SCN. The objectives were to provide a deeper understanding of how these patients think and feel and present a foundation of patient-centred insights for further research. Methods: Thirteen patients participated in semi-structured interviews; all stayed away from home for RT at the North Coast Cancer Institute for >3 days a week for >3 weeks. The data were subject to interpretive phenomenological analysis: a thorough process of understanding and analysis that is accompanied by reflection to improve researcher transparency. Results: Two themes influenced patient experiences of their care: values and identity, and expectations. Patients discussed the value they place on rural life, community connections and health care and referred to information for managing expectations. SCN discussed fell into practical, physical and psycho-social needs. Conclusions: Experiences of culturally appropriate patient-centred supportive care improve control and confidence. Patient well-being is influenced by compassionate, caring and respectful connections with others. Several practical ways of managing expectations and promoting the psycho-social well-being of patients are discussed, for example, tailored packing lists and easy access to green spaces. Future research can be shaped by lived experiences.