Psychosocial experiences of adolescents with syndromic craniosynotosis
Research type
Research Study
Full title
The psychosocial experiences of adolescents with syndromic craniosynostosis; perceptions of young people and their parents (working title)
IRAS ID
243155
Contact name
Amy Edwards
Contact email
Sponsor organisation
University of East London
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
0 years, 8 months, 29 days
Research summary
Craniofacial conditions are health conditions that affect the shape of a person's skull. It is now common for children with these conditions to be offered facial surgery to change their facial appearance. Common reasons given for choosing surgery are fear of bullying due to appearance and worries about loss of confidence due to having a facial difference in adolescence.
The study will include interviews with 6 young people aged 12-19 who have specific types of cranio-facial conditions (syndromic craniosynostosis) and have not had cosmetic facial surgery. Young people will be asked to take photographs that are relevant to their everyday social and emotional experiences. A pre-interview conversation will provide guidance around suitable images. The photographs will be used as stimulus during the young people interviews.
Separately, 6 interviews will be carried out with individual parents/carers of young people participants. Parents/carers will not be asked to take photographs.
Participants will be recruited with the help of a national cranio-facial charity (Headlines), Great Ormond Street Hospital or John Radcliffe Hospital. Interviews may take place at these hospitals or other locations more convenient for participants.
This research aims to gain understanding of how young people with these conditions experience social and emotional aspects of their lives. The study aims to explore the following questions: What do the young people and their parents/carers view as positive aspects of their emotional and social experiences?; What do the young people with and their parent/carers view as challenging aspects of their emotional and social experiences?; How have young people and their parents/carers tried to manage any challenges?.
It is hoped that this research will make a difference to families who are faced with the decision about whether to have facial surgery or not. Parents of newly diagnosed children may also find it helpful to know more about the experiences of young people who are living with the condition. It is hoped that the findings from this study will help inform professionals working with this patient population of the needs, strengths, challenges and resources of these young people and families.REC name
London - Hampstead Research Ethics Committee
REC reference
19/LO/0237
Date of REC Opinion
7 Mar 2019
REC opinion
Further Information Favourable Opinion