Study calls for better support for adults born with cleft lip and palate

May 8, 2014
Study calls for better support for adults born with cleft lip and palate

Many thousands of adults across the UK and the world are living with a cleft lip and/or palate, and yet many are unaware of the support that is available to them. Routine cleft care normally concludes around the age of 18 years. As a result, little is known about the longer-term outcomes of those living with cleft lip and/or palate.

The study by Nicola Stock, research psychologist from UWE Bristol's Centre for Appearance Research, will be published shortly in the Cleft Palate-Craniofacial Journal.

The research has influenced this month's Cleft Awareness Week and forms part of The Cleft Collective, the world's largest lip/palate research programme led by the Universities of Bristol and Manchester, which aims to address the genetic and environmental causes of cleft, the best treatments for cleft and the psychological impact of cleft.

Nicola conducted in-depth individual interviews with 52 adults from across the UK, about their experiences of growing up with the condition. Nicola's research shows that although most adults adjust well to having a cleft, many require additional information, further treatment and psychological support well into their adult years.

Nicola Stock said: "I have been working in the area of /palate for several years now, and have seen an increase in research investigating the impact of cleft on parents and children. However, until now the views and experiences of adults with the condition have been relatively neglected.

"Before the reorganisation of cleft care in the UK a number of years ago, many children born with cleft were given sub-optimal treatment and no psychological support. My research demonstrates that adults currently living with the condition believe care to have dramatically improved, and may wish to have further surgery to improve their facial appearance and function. Due to the genetic component involved in clefting, adults who are hoping to start their own family may also require information and support regarding the heritability of cleft.

"It is vital that psychological support be available to adults with cleft, to help them cope with any ongoing difficulties, and to ensure they have realistic expectations of further treatment."

Nicola's research has helped to inform this year's campaign for Cleft Awareness Week, which is focusing on support for adults with cleft. The campaign (10 – 18 May 2014) is led by the Cleft Lip and Palate Association (CLAPA), the only charity dedicated to supporting those affected by cleft and their families across the UK.

One of the taking part in the study commented, "Nicola's work is an invaluable piece of information that will enhance awareness of clefts among mothers, fathers, family members, parents expecting a baby and those with clefts themselves.

"I found myself totally relaxed to share my own experiences of being born with a and the journey from baby to teenager to adult... I did not share with anyone, even my own family until I joined CLAPA as a volunteer in 2012 and at the age of 62 met and spoke to another person with cleft for the first time in my life! It was very liberating and now I want to help as many people who may need the support that I never had.

"I was delighted that CLAPA chose Adults as their theme for this year's Awareness Week. This research will stand the test of time and help people recognise that there is a lot care and support available. I wish to give thanks and credit for Nicola's efforts and the support of CLAPA and NHS Cleft Teams around the UK who supported the study."

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."

Explore further: Study calls for better support for fathers of children with cleft lip or palate

More information: A summary of Nicola Stock's research findings is available from The Cleft Collective website: www.bris.ac.uk/dental/cleft-co … ve/news/2014/31.html

Related Stories

Study calls for better support for fathers of children with cleft lip or palate

December 10, 2013
Research psychologist Nicola Stock says fathers need better support to enable them to deal with the challenges of having a child born with a cleft lip or palate. Her research shows that appropriate support is not yet available ...

Cleft palate discovery in dogs to aid in understanding human birth defect

April 7, 2014
UC Davis School of Veterinary Medicine researchers have identified the genetic mutation responsible for a form of cleft palate in the dog breed Nova Scotia Duck Tolling Retrievers.

New gene responsible for cleft lip and palate syndrome identified

December 19, 2013
An international team led by researchers from Karolinska Institutet in Sweden has identified a new gene related to the Van der Woude syndrome, the most common syndrome with cleft lip and palate. The study is published in ...

Considerable variation in outcomes for cleft lip/Palate

August 17, 2012
(HealthDay) -- There is considerable variation in the neuropsychological, behavioral, and academic outcomes of individuals with cleft lip and palate, as the outcomes are affected by developmental level, sex, and cleft type, ...

Wider cleft width appears associated with hypernasal speech, nasal air escape

April 16, 2012
Patients with wider cleft palates appear more likely to postoperatively develop velopharyngeal insufficiency, a condition characterized by hypernasal speech and nasal air escape when speaking, according to a study published ...

Recommended for you

Google searches can be used to track dengue in underdeveloped countries

July 20, 2017
An analytical tool that combines Google search data with government-provided clinical data can quickly and accurately track dengue fever in less-developed countries, according to new research published in PLOS Computational ...

MRSA emerged years before methicillin was even discovered

July 19, 2017
Methicillin resistant Staphylococcus aureus (MRSA) emerged long before the introduction of the antibiotic methicillin into clinical practice, according to a study published in the open access journal Genome Biology. It was ...

New test distinguishes Zika from similar viral infections

July 18, 2017
A new test is the best-to-date in differentiating Zika virus infections from infections caused by similar viruses. The antibody-based assay, developed by researchers at UC Berkeley and Humabs BioMed, a private biotechnology ...

'Superbugs' study reveals complex picture of E. coli bloodstream infections

July 18, 2017
The first large-scale genetic study of Escherichia coli (E. coli) cultured from patients with bloodstream infections in England showed that drug resistant 'superbugs' are not always out-competing other strains. Research by ...

Ebola virus can persist in monkeys that survived disease, even after symptoms disappear

July 17, 2017
Ebola virus infection can be detected in rhesus monkeys that survive the disease and no longer show symptoms, according to research published by Army scientists in today's online edition of the journal Nature Microbiology. ...

Mountain gorillas have herpes virus similar to that found in humans

July 13, 2017
Scientists from the University of California, Davis, have detected a herpes virus in wild mountain gorillas that is very similar to the Epstein-Barr virus in humans, according to a study published today in the journal Scientific ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.