Adults with cleft lip or palate wanted for study of their experiences

Issue date: 29 January 2013

A new study into the experience of adults who have a cleft lip/palate has just begun at UWE Bristol, aimed at improving the support available to them.

Growing up with a cleft lip/palate can pose a number of challenges for those affected and also for their families. Understanding the needs of adults is crucial in ensuring the right support is available throughout life, and for on-going service improvement.

Nicola Stock is a researcher in cleft lip/palate from the Centre for Appearance Research, based at UWE Bristol. With the support of The Cleft Lip and Palate Association (CLAPA), she is setting up a study looking at adults' experiences of growing up with a cleft. She is seeking adult participants with cleft who may or may not be parents, and whose children may or may not have cleft.

She said, “Cleft lip and/or palate is the most common craniofacial condition, affecting one in 700 infants per year in the UK.

“I have been working in the area of cleft for a number of years now, and have seen an increase in research investigating the impact of cleft on parents and children. However, the views and experiences of adults with the condition have until now been neglected.

“Adults choosing to have their own family must also face the possibility of their own children being born with a cleft, another area of research which has previously been overlooked. I am therefore keen to speak to adults who have had their own children, particularly if their children were also born with a cleft.”

Taking part would involve doing an interview with Nicola, probably over the telephone, which would not take more than an hour. All adults who grew up with a cleft and received treatment in the UK are invited to tell their story.

Rosanna Preston, Lead on User Involvement at CLAPA said, “CLAPA is a membership association supporting people affected by cleft lip and/or palate. Our activities are directly influenced by our members and it's important that we support all people affected by cleft.”

To find out more about Nicola's research or to volunteer for this study, please contact Nicola directly:

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