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

Abstract

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 oneyear 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 re exive thematic analysis based on Gadamerian hermeneutic inquiry. Patient and carer experiences were re ected in two primary themes; 1) the battle to maintain control, and 2) navigating the road ahead. This research identi es the need to co-design strategies to improve nutrition care that is inclusive of patients and carers.

Improving patient and carer access to information and support through head and neck cancer treatment and survivorship using experience‐based co‐design

“…Purposive sampling was used to select staff from a range of disciplines within the HNC multidisciplinary team. A semistructured interview guide was developed based on findings from previous studies carried out by the principal investigator (J. H.) exploring patient and carer experiences of nutrition care 10 and used to explore staff experiences working with patients and carers seeking information and support with a focus on nutrition. Interviews were conducted face to face at a location suitable to each staff member over a 2‐month period between April and May 2021 by the principal investigator (J. H.).…”

“…Due to the physical and psychological impact of HNC on the patient and carer, coordinated care provided by a multidisciplinary team, including surgeons, oncologists, dentists and nursing and allied health professionals, is essential in the provision of person‐centred care 9 . In a study exploring patient and carer experiences of nutrition care at different time points extending from diagnosis to 1‐year posttreatment completion, we found tensions in the care relationships between patients, carers and healthcare professionals in the provision of nutrition care 10 . This study highlighted the challenges carers face in trying to access information and support independently of the patient 10 .…”

“…9 In a study exploring patient and carer experiences of nutrition care at different time points extending from diagnosis to 1year posttreatment completion, we found tensions in the care relationships between patients, carers and healthcare professionals in the provision of nutrition care. 10 This study highlighted the challenges carers face in trying to access information and support independently of the patient. 10 Contributing to this tension are the changing nutritional needs and focus of patients throughout their treatment and recovery journey.…”

“…This study highlighted the challenges carers face in trying to access information and support independently of the patient 10 . Contributing to this tension are the changing nutritional needs and focus of patients throughout their treatment and recovery journey 10 . Currently, there is no accepted standard follow‐up care for HNC survivors 5 .…”

“…10 Contributing to this tension are the changing nutritional needs and focus of patients throughout their treatment and recovery journey. 10 Currently, there is no accepted standard follow-up care for HNC survivors. 5 Exploring a dyadic model of nutrition care, we found there is a need for healthcare professionals to recognise patients and their carers as a team to ensure their physical and psychological needs are met throughout the treatment and survivorship period.…”