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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

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 Thumbnail


Authors

Kenny Ardouin

Nicky Davis

Nicola Stock Nicola2.Stock@uwe.ac.uk
Occasional Associate Lecturer - HAS - HSS



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.

Citation

Ardouin, K., Davis, N., & Stock, N. M. (in press). 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. Cleft Palate-Craniofacial Journal, https://doi.org/10.1177/10556656211025415

Journal Article Type Article
Acceptance Date May 27, 2021
Online Publication Date Jun 29, 2021
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
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

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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 (70 Kb)
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http://creativecommons.org/licenses/by-nc-nd/4.0/

Publisher Licence URL
http://www.rioxx.net/licenses/all-rights-reserved

Copyright Statement
Ardouin, K., Davis, N., & Stock, N. M. (in press). 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. Cleft Palate-Craniofacial Journal, Copyright © 2021 Sage Publishing. https://doi.org/10.1177/10556656211025415.


Expanding Support Services for Adults born with Cleft Lip and/or Palate in the UK: An Exploratory Evaluation of the Cleft Lip and Palate Association Adult Services Programme (404 Kb)
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Licence
http://creativecommons.org/licenses/by-nc-nd/4.0/

Publisher Licence URL
http://www.rioxx.net/licenses/all-rights-reserved

Copyright Statement
Ardouin, K., Davis, N., & Stock, N. M. (in press). 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. Cleft Palate-Craniofacial Journal, Copyright © 2021 Sage Publishing. https://doi.org/10.1177/10556656211025415.







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