Patient and carer experience of nutrition care throughout and beyond treatment for head and neck cancer: a qualitative longitudinal study

Nutrition care plays a critical role in optimising outcomes for patients receiving treatment for head and neck cancer (HNC), with carers playing an important role in supporting patients to maintain nutrition intake. This study explores patient and carer experience of nutrition care from diagnosis of HNC to 1 year post treatment completion to identify areas for improvement of service delivery. A longitudinal qualitative study design was used with a heterogeneous sample of 20 patients and 15 carers of patients undergoing curative intent treatment for HNC. Interviews conducted at four time points provided a total of 117 interview datasets that were analysed using reflexive thematic analysis based on Gadamerian hermeneutic inquiry. Patient and carer experiences were reflected in two primary themes: (1) the battle to maintain control and (2) navigating the road ahead. This research identifies the need to co-design strategies to improve nutrition care that is inclusive of patients and carers.