The research team is looking to interview young people aged 11 to 18 years with cleft lip/palate and their parents and their teachers.
Growing up with a cleft lip/palate can pose a number of challenges for those affected and also for their families. One such challenge is the impact of a cleft lip/palate on their relationships, learning and achievement at school. Understanding the needs of young people, as well as their parents and their teachers, is crucial in ensuring the right support is available during this key developmental time.
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), and as part of a national programme of research entitled The Cleft Collective, she has set up a study designed to ask young people about their experiences of being at school and about their future aspirations. The study also aims to capture the views of parents, and secondary school and higher education teachers.
Nicola said, “Cleft lip/palate is one of the most common congenital conditions in the world, affecting one in 600-700 infants every year in the UK.
“Previous research has suggested that a cleft lip/palate can impact upon young people’s social and educational experiences during the school years and even affect their career chances in later life. However, little research has tried to understand this topic from the views of the young people themselves, and there may be many factors which we haven’t accounted for.
“As with all young people, it is crucial that the right support is available within and outside of school, in order to give pupils the best opportunities in life. We would also like to speak to parents and to teachers, in order to capture multiple views on this important topic.”
Taking part in the research would involve speaking with a trained researcher over the telephone, for a maximum of one hour. Young people aged between 11 and 18 years are invited to tell their story, as are their parents and their teachers. The findings of the study will be used to inform treatment and support for those born with a cleft and their families, as well as future research.
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 express your interest in taking part in this study, or to find out more information, please contact Nicola directly: Nicola2.Stock@uwe.ac.uk.