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

Joanne Hiatt; Adrienne Young; Teresa Brown; Merrilyn Banks; Judith Bauer

doi:10.1111/jhn.13099

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

J Hum Nutr Diet. 2023 Apr;36(2):443-452. doi: 10.1111/jhn.13099. Epub 2022 Oct 31.

Authors

Joanne Hiatt^{1

2}, Adrienne Young^{1

2}, Teresa Brown^{1

2}, Merrilyn Banks^{1

2}, Judith Bauer^{1

2}

Affiliations

¹ School of Human Movement and Nutrition Sciences, University of Queensland, Queensland, St Lucia, Australia.
² Department of Nutrition and Dietetics, Royal Brisbane and Women's Hospital, Queensland, Herston, Australia.

PMID: 36218063
DOI: 10.1111/jhn.13099

Abstract

Background: Previous studies have highlighted the unmet nutritional and supportive care needs of patients with head and neck cancer (HNC) and their carers from diagnosis and throughout the treatment and survivorship period. The aim of this study was to bring patients, carers and healthcare professionals together to co-design a framework to improve access to nutrition information and support for patients and carers with HNC from diagnosis and throughout the treatment and survivorship period.

Methods: Using experience-based co-design (EBCD), semistructured individual interviews were conducted with patients, carers and healthcare professionals to understand their experiences in accessing information and support outside of the hospital environment. Feedback events and co-design workshops were held to prioritise areas for service improvement.

Results: Participants (10 patients, 7 carers and 15 healthcare professionals) highlighted the importance of having consistent information and support recommendations from the multidisciplinary team. The two key areas for improvement identified through group and workshop events were linking reputable HNC resources to a HNC portal on the hospital website and the development of a series of short podcasts and video blogs with fact sheets attached presented by members of the multidisciplinary team, patients and carers at four time points spanning pretreatment and throughout the survivorship period.

Conclusions: Using EBCD has enabled the co-design of a framework for resource development with patients, carers and healthcare professionals to improve access to information and resources to support nutrition intake and supportive care needs for patients with HNC with their carers. Development and implementation of resources and evaluation of outcomes is ongoing.

Keywords: access to information; experience-based co-design; head and neck neoplasm; nutrition support; qualitative research.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Access to Information
Caregivers*
Head and Neck Neoplasms* / therapy
Health Personnel
Humans
Survivorship