Improving incurable head and neck cancer healthcare experiences (ii- HANC)
The study aimed to improve the experiences of patients with incurable head and neck cancer (IHNC) by finding out the most pressing issues for them and developing solutions to improve these.
About the ii-HANC Study
This longitudinal research, co-led by Dr Catriona Mayland and her research team, set out to understand and improve the healthcare experiences of people living with incurable head and neck cancer (IHNC) and their family caregivers. Patients with IHNC often face severe pain, difficulty swallowing or speaking, and challenges that can lead to frequent hospital visits and strain on both patients and those who care for
them.
How We Did It
- Longitudinal Patient & Caregiver Interviews: We spoke with 18 patients (and, where possible, their family members) every four months, including follow-up interviews after a patient’s death, to map out “stress points” in their care journey.
- Healthcare Professional Discussions: Focus Group discussions with 23 healthcare professionals explored system-level barriers and enablers.
- Co-design Workshops: Three workshops (one online, two in person) brought together patients, carers, and healthcare professionals to prioritise issues and generate practical solutions.
Key Findings
- Critical Role of Clear Contact Information: Patients experienced wide variation in how and when support was offered; some knew exactly who to call, while others were left unsure in emergencies. Those given reliable contact details for key specialists (including alternative channels like WhatsApp) found it easier to navigate the system and avoid emergency admissions.
- Family Caregiver Challenges: Some carers felt unprepared for complex day-to-day care. Training and emotional support, paired with knowing whom to contact, boosted their confidence and ability to cope.
- Communication Gaps: Patients who received timely, tailored information made more informed decisions about treatment and end-of-life planning. Conversely, confusing or poorly timed updates caused anxiety and missed opportunities for planning.
- Medication Supply Issues: Delays or miscommunications around essential medications created avoidable distress, whereas coordinated pharmacy support smoothed the process.
Recommendations
- Quick Win: Ensure every patient and family caregiver leaves the hospital with
a concise, personalised list of key contacts, including names, roles, phone
numbers (and available hours), so they know exactly who to call and when. - Longer-Term Action: Focus on “transitions in care”, especially discharge
from hospital to home or palliative services, by developing clear handover
protocols, communication tools and checklists that keep patients and families
informed and supported at every step.
We’re delighted to announce that the ii-HANC study is now complete, and a recent poster from the study won the poster prize at the national Palliative Care Congress in March 2025. Your feedback and collaboration are welcome as we implement these improvements.
For more information about the study contact Dr Catriona Mayland