A qualitative comparison of the nutrition care experiences of carers supporting patients with head and neck cancer throughout surgery and radiation treatment and survivorship

PURPOSE: To understand and compare the nutrition care experiences of carers supporting patients throughout surgery and radiation treatment for head and neck cancer (HNC) to inform changes to service delivery in the inpatient and outpatient setting to ensure carers needs in their supportive role throughout the treatment and survivorship period are met. METHODS: As part of a larger study, narrative interviews were completed with fourteen carers of patients diagnosed with HNC at 2 weeks, 3 months and 12 months post-treatment completion. Reflexive thematic analysis was used to interpret and understand differences in carer experiences of nutrition care between surgery and radiation treatment. RESULTS: Two main themes across each treatment modality were identified: (1) access to information and support from healthcare professionals and (2) adjustment to the physical and psychological impact of treatment. CONCLUSION: This study highlights the increasing need to ensure carers are included in the provision of nutrition information and support to patients throughout and beyond their treatment trajectory. Having structured support available to patients and carers throughout radiation treatment meant that carer needs were reduced. However, without the opportunity for structured support in the inpatient setting, many carers expressed high care needs in supporting patients in the post-surgical phase. IMPLICATIONS FOR CANCER SURVIVORS: Providing carers with access to structured support for nutrition care in the inpatient and outpatient setting can reduce their supportive care needs throughout the treatment and survivorship period. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00520-022-07348-0.