Purpose: Carers play an important role in supporting patients with head and neck cancer (HNC) with their nutrition intake throughout and beyond their treatment period. Previous research has highlighted the psychological impact this has on carers, with many facing considerable levels of distress in taking on the caregiving role. The aim of this study is to explore the carer experience of nutrition care between different treatment modalities for HNC, both during and beyond the treatment period.
Methods: Fourteen carers were asked to describe their experience of providing nutrition care for a patient undergoing treatment for HNC. Interviews were conducted at two weeks, three months, and 12 months post treatment completion. Applied thematic analysis was used to identify themes within interview transcripts. NVivio12 software was employed to generate and categorise initial codes and themes.
Results: Carers experiences of nutrition care were reflected in one overarching theme “carers place little importance on themselves”, encompassing four themes; 1) the difficulties in managing nutrition care, 2) conditional support, 3) the sacrifices of a carer, 4) the uncertainty of the journey beyond treatment. Subthemes and subcategories were identified within each theme.
Conclusion: Findings from this study have provided valuable insight into similarities and differences of the carer experience of nutrition care between different treatment modalities. Many carers of patients with HNC have unmet supportive care needs and struggle with supporting the patient with their nutrition intake. Carers in this study prioritised the well-being of the patient and sacrificed their own quality of life and health to care for the patient. Addressing gaps in carer access to information and support from healthcare professionals across the different treatment modalities may help improve nutrition care processes in HNC.