Abstract
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.