Expanding support services for adults born with cleft lip and/or palate in the United Kingdom: An exploratory evaluation of the cleft lip and palate association adult services programme

Ardouin, Kenny; Davis, Nicky; Stock, Nicola Marie

Abstract

Background: The largest group of people living with repaired cleft lip and/or palate (CL/P) are adults. Previous research has identified unmet treatment and psychosocial needs, yet few interventions exist. This article outlines 3 interventions developed by the Cleft Lip and Palate Association as part of its 3-year community-based Adult Services Programme; an Adults Conference, a series of panel discussions (“Cleft Talk”) streamed in podcast/video format, and a Leaver’s Pack of resources for adults wishing to return to cleft care. Methods: Feedback from attendees of the Adults Conferences (2018-2019) was collected using specifically developed evaluation forms. Streaming metrics and social media interactions were extracted for Cleft Talk panel discussions (2019-2020). The Leaver’s Pack was piloted in 2020, using an online evaluation form. Specialist health professionals were invited to provide feedback or participate in a one-to-one interview regarding their perceived impact of the program.
Results: All 3 interventions across the different modalities received support from participating adults, demonstrating potential to meet adults’ needs across the life span. Health professionals also offered support for the program, viewing the interventions as a valuable adjunct to formal medical CL/P services.
Conclusions: This exploratory evaluation indicates that peer- and community-led interventions, in combination with ongoing access to specialist medical care, can have a range of positive impacts for adults with CL/P. There is scope for similar initiatives to be developed internationally and for individuals with other craniofacial conditions. Not-for-profit organizations are encouraged to routinely evaluate their interventions to create a stronger evidence base for their valuable work.

• Journal Article Type: Article
• Acceptance Date: May 27, 2021
• Online Publication Date: Jun 29, 2021
• Publication Date: Apr 1, 2022
• Deposit Date: Jun 30, 2021
• Publicly Available Date: Jul 6, 2021
• Journal: The Cleft Palate-Craniofacial Journal
• Print ISSN: 1055-6656
• Electronic ISSN: 1545-1569
• Publisher: SAGE Publications
• Peer Reviewed: Peer Reviewed
• Volume: 59
• Issue: 4_suppl2
• Pages: S48-S56
• DOI: https://doi.org/10.1177/10556656211025415
• Keywords: cleft lip and palate, adult, intervention, evaluation, psychosocial, treatment, visible difference
• Public URL: https://uwe-repository.worktribe.com/output/7502147