The aim of the study is to improve understanding of families’ and young peoples’ experiences of cleft lip and/or palate and develop information resources to support them, their friends and family and the health professionals involved in their care.
Dr Aidan Searle, a Research Associate from the School of Oral and Dental Science, who is conducting interviews with families, said: “Many parents of children with cleft lip and/or palate can feel anxious or concerned about treatment and their child’s future development.
“By taking part in the study, parents will have the opportunity to talk about their own positive and negative experiences or concerns. As well as speaking to families we are especially keen to speak to young people aged 16 years upwards who were born with a cleft lip and/or palate to find out about their own experiences.”
Taking part in the study will involve participating in a video or audio interview about personal experiences of cleft lip and/or palate.
The researchers will ask participants about the impact that a diagnosis of cleft lip and/or palate had on them and their family, their thoughts and feelings at different stages of treatment, how they have got information about cleft lip and/or palate, how they have made decisions about treatment and what have been the good and bad parts of the experience.
The interviews will also be used to find out what is important to people faced with different health issues. Selected video, audio or text clips from the interviews will be used to develop a website about cleft lip and/or palate for patients, families and health professionals (see www.healthtalkonline.org).
Healthtalkonline has personal stories of health and illness that enables patients, families, carers and healthcare professionals to benefit from the experiences of others.
Participation in the research study is voluntary and people have the right to withdraw from the study at any point.
Parents and individuals who are interested in telling researchers their story or would like more information about taking part in the cleft lip and /or palate research should contact Aidan Searle on tel (0117) 342 1761 or email A.J.Searle@bristol.ac.uk
Healthtalkonline is an award-winning website run by the charity DIPEx. On the website people can watch video clips, listen to the voices or read the accounts of people relating to their experiences of a wide range of health conditions.
The study has had ethical approval from the Berkshire Research Ethics Committee.
The Health Experiences Research Group is based at the Department of Primary Care Health Sciences, University of Oxford. The project for cleft lip and/or palate is being funded by the National Institute for Health Research, Research for Patient Benefit Programme.