Parents' experiences of decision-making about orthognathic surgery
Research type
Research Study
Full title
Parents' experiences of the decision-making process for elective surgery at transition in cleft lip and palate: An Interpretative Phenomenological Analysis
IRAS ID
266133
Contact name
Jana Safarikova
Contact email
Sponsor organisation
University of East Anglia
Duration of Study in the UK
1 years, 1 months, 7 days
Research summary
Approximately one in 700 babies in the United Kingdom (UK) is born with a cleft lip and/or palate (CL/P), the most common congenital conditions of the face and oral cavity. The National Health Service offers specialist Cleft Lip and Palate Services with some 20-year care pathway, personalised to the individual’s needs during their development.
Young people with CL/P are offered an elective surgery for functional/aesthetic reasons to realign the jaw and chin which is performed in early adulthood. This is often the first major health-related decision which young people make independently, with a potentially significant impact on their lives.
Similarly, it is a significant time for their parents as their role in decision-making is changing. However, there is little research into parental experiences and needs at this stage. The proposed study aims to broaden our understanding of this transition and to develop better support for parents during this crucial stage.
Eight to 10 parents whose children have made decisions about this elective surgery in the last five years whether in favour or against will be interviewed (the surgery has not happened). The clinical team will identify and approach potential participants and with their consent share their details with the researcher to answer any questions and arrange interviews.
Consent will be signed, demographic information collected and interviews conducted on premises of the clinical team caring for the young person, at participants’ homes or University of East Anglia. Skype is also an option for interviews. The sessions including a debriefing will be audio recorded. Participants will have a week afterwards to decide if they would like to withdraw from the study. After this time the interviews will be transcribed and data analysed using a qualitative, interpretative phenomenological analysis. The write-up will represent a part of a doctoral thesis for wider dissertation.REC name
West of Scotland REC 5
REC reference
20/WS/0034
Date of REC Opinion
12 Feb 2020
REC opinion
Favourable Opinion