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“When I was younger, my story belonged to everyone else”: Co-production of resources for adults living with craniosynostosis

Stock, Nicola M.; Costa, Bruna; Bannister, William; Ashby, Charlotte; Matthews, Nammie; Hebden, Louise; Melles, Laura; Hilton-Webb, Zoe; Smith, Sally; Kane, Kristian; Carter, Lewis; Kearney, Anna; Piggott, Katie; Russell, Charlotte; Wilkinson-Bell, Karen

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Authors

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

Bruna Costa

William Bannister

Charlotte Ashby

Nammie Matthews

Louise Hebden

Laura Melles

Zoe Hilton-Webb

Sally Smith

Kristian Kane

Lewis Carter

Anna Kearney

Katie Piggott

Charlotte Russell

Karen Wilkinson-Bell



Abstract

Objective: Despite growing recognition that congenital craniofacial conditions have lifelong implications, psychological support for adults is currently lacking. The aim of this project was to produce a series of short films about living with craniosynostosis in adulthood, alongside a psychoeducational booklet. Design: The resources were developed using multiple focus groups and meetings attended by researchers, patient representatives, a leading charitable organisation, an award-winning film production company, clinicians, and other experts in the field. Results: An online mixed-methods survey was developed based on prior work to request feedback on the acceptability and utility of the resources from the craniosynostosis community. While data collection to evaluate the resources is ongoing, preliminary results (n = 36) highlight an acceptability rating of 100%. Conclusions: The resources developed represent a step forward in addressing the unmet information and support needs of adults with craniosynostosis and highlight the benefits of co-production in research.

Citation

Stock, N. M., Costa, B., Bannister, W., Ashby, C., Matthews, N., Hebden, L., …Wilkinson-Bell, K. (in press). “When I was younger, my story belonged to everyone else”: Co-production of resources for adults living with craniosynostosis. Cleft Palate-Craniofacial Journal, https://doi.org/10.1177/10556656241236580

Journal Article Type Article
Acceptance Date Feb 8, 2024
Online Publication Date Mar 18, 2024
Deposit Date Feb 15, 2024
Publicly Available Date Apr 12, 2024
Journal Cleft Palate Craniofacial Journal
Print ISSN 1055-6656
Electronic ISSN 1545-1569
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
DOI https://doi.org/10.1177/10556656241236580
Keywords Otorhinolaryngology, Oral Surgery
Public URL https://uwe-repository.worktribe.com/output/11716597

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“When I was younger, my story belonged to everyone else”: Co-production of resources for adults living with craniosynostosis (216 Kb)
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Licence
http://creativecommons.org/licenses/by-nc-nd/4.0/

Copyright Statement
Stock, N. M., Costa, B., Bannister, W., Ashby, C., Matthews, N., Hebden, L., …Wilkinson-Bell, K. (in press). “When I was younger, my story belonged to everyone else”: Co-production of resources for adults living with craniosynostosis. Cleft Palate-Craniofacial Journal, Copyright © 2024, American Cleft Palate Craniofacial Association. DOI: https://doi.org/10.1177/10556656241236580.


“When I was younger, my story belonged to everyone else”: Co-production of resources for adults living with craniosynostosis (42 Kb)
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Licence
http://creativecommons.org/licenses/by-nc-nd/4.0/

Copyright Statement
Stock, N. M., Costa, B., Bannister, W., Ashby, C., Matthews, N., Hebden, L., …Wilkinson-Bell, K. (in press). “When I was younger, my story belonged to everyone else”: Co-production of resources for adults living with craniosynostosis. Cleft Palate-Craniofacial Journal, Copyright © 2024, American Cleft Palate Craniofacial Association. DOI: https://doi.org/10.1177/10556656241236580.





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