Title: Family experiences of cleft lip and palate: development and pilot testing of a multi-media web resource
Funder: Department of Health (England)

Abstract: Background Cleft lip / palate (CLP) is a common congenital condition in the United Kingdom with an estimated prevalence of 1:700 live births. This qualitative study will both complement and contribute to an ongoing NIHR Healing Foundation programme and planned UK cohort study. Previous work shows that parents of a child with a cleft and young people have concerns re: diagnosis; impact of cleft on relationships with others; care / treatment pathways; and future prospects in childhood, adolescence and adulthood. We will use 50-60 qualitative interviews to examine such issues in a broad sample of parents of children and young people of different ages. Results will provide support for families, professional practice and training and will be used to inform policy makers and guide future research. Aims NHS staff supporting parents of children with a cleft have identified a need for resources to inform and support families and train professionals. We propose research and innovative dissemination to: • explore family perspectives and experiences of having / being a child with cleft 1) identify questions / problems that matter to families throughout infancy, childhood and adolescence 2) help develop resources for families and children in different age groups 3) work with collaborators to develop resources for cleft teams and others working with children with clefts including the Cleft Lip and Palate Association (CLAPA), Craniofacial Society of Great Britain and Ireland (CFSGB) & Changing Faces 4) produce a new section on the award-winning www.healthtalkonline.org. Plan of Investigation Review and synthesise existing studies of family experiences of cleft to guide planned interviews. In-depth interviews with parents and young people recruited through cleft centres, support groups (CLAPA, CFSGB and Changing Faces). Interviews will be recorded and analysed systematically with computer software. In collaboration with the Healing Foundation Centre at the University of Manchester and the Centre for Appearance Research at the University of the West of England we will determine how best to use the interviews to guide training, practice and policy. Innovative dissemination will include a new section on www.healthtalkonline.org, a web resource of over 50 health conditions and carefully balanced video / audio clips from thousands of interviews. Potential Impact The research will improve our understanding of how families experience cleft lip and palate and how those working with cleft children can help support these families. The research will also be used to develop a Healthtalkonline (HTO) cleft lip and palate site to: 1) provide practical and emotional support to help families where a child has a cleft 2) include hundreds of video / audio clips from a wide range of family members talking about their experiences 3) give details of helplines and other resources including CLAPA, CFSGB and Changing Faces 4) provide a family-centred perspective for clinicians, teachers, researchers, managers and those who commission health services 5) be an educational resource for medical students, doctors in training, nurses and other health professionals.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: ORAL AND GASTROINTESTINAL