Improving incurable head and neck cancer healthcare experiences (v1.0)
Research type
Research Study
Full title
Understanding and identifying priorities for improving the healthcare experiences of people with incurable head and neck cancer: a qualitative investigation and co-design approach
IRAS ID
320263
Contact name
Catriona R Mayland
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 8 months, 31 days
Research summary
Why does this research matter?
We aim to improve 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.
Patients with IHNC have many complex needs and the level of support they require is often greater than other illnesses. IHNC symptoms cause major changes to basic functions, such as: being unable to talk; severe swallowing problems with a high choking risk; breathing difficulties requiring a hole in the neck (tracheostomy). The manner of death can be highly traumatic and frightening e.g. catastrophic bleeding from the neck. Despite this poor outlook, little is known about patients’ needs in the last year of life. However, IHNC patients have more emergency hospital visits compared with other cancer groups. Patients from poorer areas are more likely to die in hospital. Furthermore, head and neck cancer (HNC) units are centralised, with access to specialist services dependent on where you live.
We need to understand ‘stress points’ in the patients' journey, where things do not go as planned, identify priorities for change and develop patient-led solutions.
How will we do this?
There are two main parts to our work, occurring over 21-months across Yorkshire, Northwest and Northeast England.
1. A series of up to three interviews with approximately 25 IHNC patients and their families, along with group discussions with healthcare workers involved in IHNC care. These will explore how patients’ needs and use of healthcare change over time.
2. Using interview and group discussion findings, we will hold a series of workshops with patients, families, clinical service leaders, and healthcare workers. We will identify priorities and develop ways to improve care experiences.
The research is funded by the National Institute for Health Research (NIHR) Research for Patient Benefit programme.
Summary of results
Our ultimate goal is improving experiences for patients with incurable head and neck cancer (IHNC). First, we needed to find out the most pressing issues and then start to identify patient-led solutions.Why is this important?
Patients with IHNC have many complex needs. This includes changes to basic functioning such as having difficulty speaking, breathing issues and having swallowing problems. They are twice as likely to have multiple emergency hospital visits compared with other cancer groups. Patients living in poorer areas are more likely to die in hospital.
What did we do?
The study was divided into two main parts and occurred across three areas of Northern England.
1. We conducted a series of up to three interviews with 18 patients. If the patient was too unwell or had died, the family caregiver was interviewed. Additionally, we conducted group discussions with 23 healthcare workers involved in IHNC care.
The main issues identified were the variability in experiences about:
● being able to obtain medications
● how prepared family caregiver felt about supporting the patient ● what information patients needed.Finding their way around the healthcare system was a challenge especially when a crisis arose. Initial ideas about using more information technology and healthcare teams working in different ways (e.g., combining reviews with hospital and community staff) were discussed.
2. We held a series of workshops (one on-line, two face-to-face) with 13 people. Participants either had direct experience of HNC or palliative care; were healthcare workers or were service leaders. Helping prepare family caregivers and finding ways to navigate the healthcare system were selected as priorities. Potential solutions included: providing patients +/- family caregivers with contact details for key healthcare workers and having a ‘transition’ meeting (involving patient, family and healthcare workers) when a patient is going home from hospital.
REC name
West Midlands - Solihull Research Ethics Committee
REC reference
23/WM/0007
Date of REC Opinion
24 Feb 2023
REC opinion
Further Information Favourable Opinion