e-Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2020

Patient and carer experience of nutrition care throughout and beyond treatment for head and neck cancer:  a qualitative longitudinal study  (#333)

Joanne Hiatt 1 , Teresa Brown 1 , Adrienne Young 1 , Merrilyn Banks 1 , Judy Bauer 2
  1. Royal Brisbane and Women's Hospital, Herston, QLD
  2. University of Queensland, St Lucia, QLD

Background:  Nutrition care plays a critical role in the provision of best practice care to patients receiving treatment for head and neck cancer (HNC). Carers play an important role in supporting patients to maintain nutrition intake.   

Purpose:  To explore and understand patient and carer experience of nutrition care from diagnosis of HNC and over a period of one year from treatment completion to identify areas for improvement of service delivery.   

Methods:  A qualitative study design was used with a heterogeneous sample of 20 patients and 15 carers of patients undergoing curative intent treatment for HNC recruited from outpatient clinics of a single tertiary hospital in Brisbane, Australia.  Interviews conducted at four time points (pre-treatment, and 2 weeks, 3 months and one-year post treatment completion) provided a total of 117 interview datasets that were analysed using reflexive thematic analysis based on Gadamerian hermeneutic inquiry.   

Results: Based on preliminary analysis, patient and carer experiences were reflected in two primary themes and nine subthemes including: 1) the battle to maintain control (health and nutrition beliefs, weight loss rollercoaster, acceptance of feeding tube, gatekeeper role of patient, invisible load of carer); and 2) navigating the road ahead (challenges comprehending information provided, information accessibility and inclusivity, moving away from hospital environment, peer support).

Conclusion:  Findings from this study highlight tensions in the care relationships between patients, carers and healthcare professionals, as well as the changing nutritional needs and focus throughout the treatment and recovery journey.  This research suggests there is a need to co-design strategies to improve nutrition care delivery for patients and carers during and after treatment that considers both practical and emotional supports, that is easily accessible outside the hospital setting and inclusive of patients and carers regardless of geographical location, stage of treatment or recovery journey, and individual health beliefs.