Decision-making in cleft lip and/or palate surgery
Research type
Research Study
Full title
Exploring experiences of decision-making for appearance altering lip/nose surgery in adults born with a cleft lip and/or palate
IRAS ID
334618
Contact name
David Dawson
Contact email
Sponsor organisation
University of Lincoln
Duration of Study in the UK
1 years, 1 months, 28 days
Research summary
Research Summary
The study aims to explore the experience of adults who were born with a cleft lip and/or palate (CL/P) around deciding whether to have surgery to alter the appearance of their lip and/or nose. A CL/P is the most common craniofacial (relating to the skull and face) abnormality in the United Kingdom, affecting around 1 in every 700 babies.
We know that individuals with a CL/P have multiple surgeries throughout their lifetime and research has suggested that as children, patients may not often be included in the decision-making process but want to be. Research also shows that patients, professionals, and caregivers often have differing views about the purpose and need for surgery. It is not yet fully understood how adults experience the decision-making process around surgery and how they come to a decision about this.
Adults born with a CL/P who are considering, waiting for, or have recently had surgery to alter the appearance of their lip and/or nose will be invited to take part in an interview to discuss these experiences. The length of the interview will depend on how much the participant choses to share. The information gained in the interviews may help us to understand how professionals can support individuals whilst they are considering lip/nose surgery and help clinical psychologists to identify those who may need additional support.
Participants will be recruited through the Trent Regional Cleft Network and through social media and they will complete a questionnaire to ensure it is suitable for them to take part. An additional questionnaire to collect information about their circumstances and background will also be completed by participants prior to the interview to help researchers interpret findings. Interviews will be recorded so that they can be converted into written form before being explored for themes.
Summary of Results
Exploring Experiences of Decision-Making for Appearance Altering Lip/Nose Surgery in Adults Born with A Cleft Lip and/or Palate
This research was completed by a trainee clinical psychologist as part fulfilment of the requirements for the Doctorate in Clinical Psychology, supported by qualified clinical psychologists. The research team worked with people who have experience using healthcare services to help shape the study’s questions. This group, called the Service User and Carer Involvement Panel provided early input to make sure the research focused on issues that really matter to patients. Before collecting data, the team also involved more people with cleft lip and/or palate to identify and address any potential problems that might make it difficult for people to join or stay involved in the research. To do this, patients attending a cleft surgery clinic were asked to look over the study materials and give feedback through a short questionnaire.
The study was completed because adults who were born with a cleft lip and/or palate sometimes feel unhappy about how their lip and/or nose looks and choose to have surgery to change their appearance. For many, this is the first time they are making their own decision about surgery, rather than their parents or doctors deciding for them. However, not much is known about what this decision-making process feels like for them.
The aim of the study was to explore how adults experience the decision-making process when considering surgery to alter the appearance of their lip and/or nose and also what factors might contribute to this.
In this study, 12 adults aged 20 to 61 recruited from a cleft treatment centre in the United Kingdom were interviewed about their experiences. Some had already had surgery, some were planning to, and others were still deciding. The interviews were held online or by phone.
The researchers found three main themes:
1. Legacy of adversity – Past difficult experiences, such as bullying or negative self-image, continued to shape how participants felt about themselves.
2. Conflict and emotional struggle – Participants described feeling torn, scared, or unsure about surgery, worrying about whether it would improve their appearance or make them feel like they were losing part of their identity.
3. Taking back control – Many saw making their own surgical decisions as a way to reclaim control over their bodies and lives, though this process was not easy.The study suggests that adults thinking about lip or nose surgery could benefit from psychological support to help them cope with past negative experiences and to manage any fear or uncertainty about their decisions.
REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
24/NW/0050
Date of REC Opinion
1 Mar 2024
REC opinion
Favourable Opinion