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Establishing an international interdisciplinary research network in craniofacial microsomia: The CARE Program

Stock, Nicola M.; Crerand, Canice E.; Johns, Alexis L.; McKinney, Christy M.; Koudstaal, Maarten J; Drake, Amelia F; Heike, Carrie L.

Establishing an international interdisciplinary research network in craniofacial microsomia: The CARE Program Thumbnail


Authors

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

Canice E. Crerand

Alexis L. Johns

Christy M. McKinney

Maarten J Koudstaal

Amelia F Drake

Carrie L. Heike



Abstract

Objective: Craniofacial microsomia (CFM) is a broad clinical term used to describe a congenital condition most commonly involving the underdevelopment of the external ear, mandible, soft tissues, and facial nerve. Despite medical advances, understanding of the psychological health and healthcare experiences of individuals with CFM and their caregivers remains limited. This article describes a research program designed to address these knowledge gaps, and identify opportunities for psychosocial intervention and improved healthcare provision. Design: The Craniofacial microsomia: Accelerating Research and Education (CARE) research program aims to: 1) Conduct up to 160 narrative interviews with individuals and caregivers to validate a conceptual framework; 2) Administer an online international survey of up to 800 individuals with CFM and caregivers to identify predictors of psychological distress; 3) Perform up to 60 semi-structured interviews with healthcare providers and advocacy leaders to examine the extent to which current healthcare provisions address identified patient needs; and 4) Establish a participant registry to build a longitudinal database and develop an international community. Results: Teams in the USA and UK have been established, alongside an international, interdisciplinary Advisory Committee. Data analysis for Aim 1 is ongoing and informing the delivery of Aims 2-3. Aim 4 is also in development. A dedicated website serves as a recruitment tool, educational resource, and mechanism for engaging with the CFM community. Conclusions: The CARE program provides a comprehensive approach to understanding the experiences of individuals with CFM and their caregivers. Challenges encountered and lessons learned are shared for the benefit of the community.

Citation

Stock, N. M., Crerand, C. E., Johns, A. L., McKinney, C. M., Koudstaal, M. J., Drake, A. F., & Heike, C. L. (in press). Establishing an international interdisciplinary research network in craniofacial microsomia: The CARE Program. Cleft Palate-Craniofacial Journal, https://doi.org/10.1177/10556656231176904

Journal Article Type Article
Acceptance Date Apr 12, 2023
Online Publication Date May 29, 2023
Deposit Date Jun 14, 2023
Publicly Available Date Jun 15, 2023
Journal Cleft Palate Craniofacial Journal
Print ISSN 1055-6656
Electronic ISSN 1545-1569
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
DOI https://doi.org/10.1177/10556656231176904
Keywords visible difference; craniofacial; research protocol; international; interdisciplinary; mixed methods
Public URL https://uwe-repository.worktribe.com/output/10862261
Publisher URL https://journals.sagepub.com/doi/abs/10.1177/10556656231176904

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Establishing an international interdisciplinary research network in craniofacial microsomia: The CARE Program (266 Kb)
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Licence
http://creativecommons.org/licenses/by-nc-nd/4.0/

Publisher Licence URL
http://creativecommons.org/licenses/by-nc-nd/4.0/

Copyright Statement
This is the accepted version of the article 'Stock, N., Crerand, C. E., Johns, A. L., McKinney, C. M., Koudstaal, M. J., Drake, A. F., & Heike, C. L. (in press). Establishing an international interdisciplinary research network in craniofacial microsomia: The CARE Program. Cleft Palate-Craniofacial Journal'.

DOI: https://doi.org/10.1177/10556656231176904

The final published version is available here: https://journals.sagepub.com/doi/abs/10.1177/10556656231176904/10556656231176904


Establishing an international interdisciplinary research network in craniofacial microsomia: The CARE Program (122 Kb)
Document

Licence
http://creativecommons.org/licenses/by-nc-nd/4.0/

Publisher Licence URL
http://creativecommons.org/licenses/by-nc-nd/4.0/

Copyright Statement
This is the accepted version of the article 'Stock, N., Crerand, C. E., Johns, A. L., McKinney, C. M., Koudstaal, M. J., Drake, A. F., & Heike, C. L. (in press). Establishing an international interdisciplinary research network in craniofacial microsomia: The CARE Program. Cleft Palate-Craniofacial Journal'.

DOI: https://doi.org/10.1177/10556656231176904

The final published version is available here: https://journals.sagepub.com/doi/abs/10.1177/10556656231176904/10556656231176904






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