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Lookup NU author(s): Professor Linda SharpORCiD, David Hamilton
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© The Author(s) 2026. This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).Background: The disease trajectory for people with incurable head and neck cancer is unpredictable. This group also has high healthcare utilisation. Aim: To explore multi-perspectives views about incurable head and neck cancer healthcare experiences over time and how best to improve care. Design: A prospective, longitudinal qualitative study was conducted involving three head and neck cancer networks in Northern England. Maximum variation sampling of incurable head and neck cancer adult patients (⩾ 18 years) was conducted. Patients were invited to participate in up to three serial interviews (conducted every 4 months); caregivers could support interviews and were ‘proxies’ if the patient became too unwell or died. Online focus groups were conducted with healthcare professionals. Picker’s ‘Principles of Patient-Centred Care’ informed topic guides and framework analysis. Results: Forty-nine participants (18 patients, eight caregivers and 23 healthcare professionals) were involved in 44 interviews and 4 focus groups. Participants’ accounts revealed systemic variability in experiences of healthcare delivery especially in terms of medication access, caregiver preparedness and information needs. Navigating a ‘fragmented’ healthcare system was a key challenge, within both non-emergency and emergency situations and especially if living alone. Suggestions to improve healthcare experiences included improving clarity about key healthcare professional contacts and communication around prescribing, and diversifying means of healthcare team working. Conclusion: Issues relating to variability in experiences and challenges in healthcare system navigation, including access to symptom-relieving medication, impact on patient-centred care. Consideration to accessible means of seeking advice and support as well as improving caregivers’ preparedness are key priorities.
Author(s): Mayland CR, Achinanya A, Harrison M, Bryant V, Payne S, Sharp L, Hamilton D, Patterson JM
Publication type: Article
Publication status: Published
Journal: Palliative Medicine
Year: 2026
Pages: epub ahead of print
Online publication date: 25/02/2026
Acceptance date: 02/04/2018
Date deposited: 09/03/2026
ISSN (print): 0269-2163
ISSN (electronic): 1477-030X
Publisher: Sage Publications Ltd
URL: https://doi.org/10.1177/02692163261416267
DOI: 10.1177/02692163261416267
Data Access Statement: The data underlying this article will be shared on reasonable request to the corresponding author, Dr Catriona R Mayland (c.r.mayland@sheffield.ac.uk).*
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