An exploration of experiences of midface distraction surgery
Research type
Research Study
Full title
An exploration of child and parent experiences of childhood midface surgery and adjustment to life following surgery
IRAS ID
261595
Contact name
Meghan Owens
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
0 years, 9 months, 4 days
Research summary
Research Summary
This educational project intends to explore the experience of undergoing surgery for a condition called syndromic Craniosynostosis. Craniosynostosis is a rare condition where a baby's skull doesn't grow properly and their head becomes an unusual shape. The condition will affect every child to differing degrees, often impacting upon physical health and several domains of psychological and emotional functioning. Craniosynostosis may require regular treatment and multiple surgeries over a period of years. This may involve midface distraction surgery. Surgical intervention is often recommended to parents of children with Craniosynostosis to improve physical function and psychological wellbeing (Marsh, 2006). There is however, much debate in this area as to whether surgery always improves psychological wellbeing in these children. The potential physical risks of these procedures are well established however, there is little information about the potential psychological and social implications of surgery (Asch, 2006; Mouradian, Edwards, Topolski, Rumsey & Patrick, 2006).
The aims of the study are to;
• To explore the experiences of midface distraction surgery and the meaning that children and their families attach to this intervention.
• To gain an understanding of adjustment to life after surgery, exploring factors which influence perceived success and difficulties.
• To provide children and families who are considering midface surgery with information about life after surgery via first hand experiences.
Children between the ages of six and twelve, with a diagnosis of syndromic Craniosynostosis who have undergone midface surgery as a treatment and their parents will be invited to take part in an interview. The surgery will have taken place between six months and three years prior to interviewing.
The interview will take up to 60 minutes and explore post-operative outcomes, psychological aspects of adjustment and sense of identity.
Families will be recruited from two nationally designated craniofacial centres; Alder Hey Children’s Hospital and Great Ormond Street Hospital.Summary of Results
The findings highlighted the ongoing challenges presented by social responses towards difference. With societal pressures around appearance contributing to the decisionmaking process to undergo this appearance altering surgery. The study identified whilst for some surgery acted as a catalyst for growth, whilst for others unexpected outcomes occurred.
The value of peer support networks and connecting with others was demonstrated both for children and parents. Finally, there is a need for more research in this area to truly capture the experiences of appearance altering surgery and the meanings families ascribe to these interventions.REC name
North West - Liverpool Central Research Ethics Committee
REC reference
19/NW/0396
Date of REC Opinion
17 Sep 2019
REC opinion
Further Information Favourable Opinion