The CLAPA Adult Services Project: Using Evidence-Based Practice to Design and Deliver New
Kenny Ardouin1, Nicky Davis1, Nicola M Stock2
1Cleft Lip and Palate Association, London, United Kingdom 2Centre for Appearance Research,
University of the West of England, Bristol, United Kingdom
Background: In the UK alone, more than 1,000 infants are born with a cleft lip and/or palate (CL/P)
each year. Although primary treatment for CL/P occurs during childhood, previous research conducted by the Centre for Appearance Research (CAR) demonstrated that multidisciplinary concerns can extend into adulthood. As a result, there is increasing recognition of CL/P as a lifelong condition, for which care and support should be available throughout all stages of life. In response, the Cleft Lip and Palate Association (CLAPA) developed their Adult Services Programme to identify areas of unmet need and develop effective community-based interventions.
Methods: An online, mixed methods survey focusing on all aspects of adults’ lives was designed by
CLAPA and CAR. A total of 207 eligible responses were received between July-October 2018.
Findings: Survey results demonstrated ongoing challenges in relation to adults’ emotional wellbeing,
interpersonal relationships, physical health, and treatment decision-making. These findings
highlighted the need for interventions aimed at young adults about to be discharged from routine
care, as well as older adults who left the CL/P service many years ago.
Discussion: To address these gaps in service provision, CLAPA established an annual Adults
Conference, panel discussions on key topics broadcast via online videos and a dedicated podcast, and
a Leaver’s Pack of information regarding future access to NHS and community services for distribution
at the final routine CL/P appointment. This presentation will provide an overview of the findings from
the 2018 survey alongside evaluation of the implementation of the interventions subsequently