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The contribution of a charitable organisation to regional cleft lip and palate services in England and Scotland

Stock, Nicola Marie; Guest, Ella; Stoneman, Kate; Ridley, Matthew; Evans, Claire; LeRoy, Cherry; Anwar, Hamza; McCarthy, Gillian; Cunniffe, Claire; Rumsey, Nichola

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Nicola Stock
Occasional Associate Lecturer - CHSS - HSS

Ella Guest
Occasional Associate Lecturer - CHSS - HSS

Kate Stoneman

Matthew Ridley

Claire Evans

Cherry LeRoy

Hamza Anwar

Gillian McCarthy

Claire Cunniffe


Background: From diagnosis through to adulthood, a cleft lip and/or palate (CL/P) poses a number of challenges for those affected. Alongside the care provided by clinical teams, complementary information and support is offered by charitable organizations. In 2011, the Cleft Lip and Palate Association received funding to implement a new regional service across England and Scotland, with the aim of increasing support at a local level. The Centre for Appearance Research at the University of the West of England were commissioned to conduct an independent evaluation of the service over 7 years. Methods: A pragmatic, mixed-methods approach was utilized to assess the impact of the service from the perspective of charity volunteers; children, young people, and adults with CL/P; caregivers; and clinicians. Feedback forms were distributed to stakeholders at a variety of events, and qualitative feedback was collected via focus groups and an online survey. Results: The majority of participants indicated they had gained access to a local support network, felt more able to cope with CL/P-related challenges, and felt more confident in themselves. Qualitative investigation provided further support for these findings and highlighted additional benefits of the regional service for clinical teams. Conclusions: The evaluation provides encouraging evidence toward the contribution of a relatively small charitable organization in the context of cleft care. The importance of a pragmatic approach to community-based evaluation and the benefits of collaborative working between researchers and the charitable sector were also highlighted.

Journal Article Type Article
Acceptance Date Nov 12, 2018
Online Publication Date Jul 15, 2019
Publication Date Jan 1, 2020
Deposit Date Nov 13, 2018
Publicly Available Date Nov 13, 2018
Journal Cleft Palate-Craniofacial Journal
Print ISSN 1055-6656
Electronic ISSN 1545-1569
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Volume 57
Issue 1
Pages 14-20
Keywords cleft lip and palate, charity, peer support, evaluation, volunteer, quality of life, visible difference
Public URL
Contract Date Nov 13, 2018


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