REFLECT
Research type
Research Study
Full title
Evaluation of the information and support needs of children at risk of developing facial deformation after radiotherapy
IRAS ID
335494
Contact name
Lucy Siew Chen Davies
Contact email
Sponsor organisation
The Christie NHS Foundation Trust
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
What is the health problem?
Radiotherapy is used to treat children with head and neck cancer. Radiotherapy works by damaging cancer cells, but it can also damage nearby healthy tissues, including bone. In a growing child this can result in facial bones growing unevenly, which can lead to facial deformation (e.g., asymmetry and/or incomplete development). Facial deformation can cause functional problems such as eating and talking, affecting quality of life. It can have a significant negative impact on individuals' confidence and self-esteem. We do not fully understand what it is like for childhood cancer survivors to live with facial deformation after treatment. There is a lack of appropriate support services for children who have survived cancer but are living with the long-term facial effects of head and neck radiotherapy. Similarly, there is a lack of pre-treatment information provision for parents/carers in relation to counselling them on the possible risks of their child developing facial deformation after head and neck radiotherapy.
What we will do:
This research aims to develop understanding of the experiences and perspectives of childhood head and neck cancer survivors and their parent(s)/carer(s) around the impact of living with facial deformation. It aims to evaluate the current information and support needs of children at risk of developing facial deformation after radiotherapy.
This two-phase qualitative study will carry out semi-structured individual interviews with childhood head and neck cancer survivors (diagnosed before the age of 12 years who are now aged 16+ years) and utilise a focus group with parents/carers of children who have clinically reported facial deformation after radiotherapy. Reflective thematic analysis will be used to analyse the interview and focus group data through coding extracts of the data to generate themes.
REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
25/NW/0243
Date of REC Opinion
12 Sep 2025
REC opinion
Favourable Opinion