Alexis L Johns
Psychosocial and health-related experiences of individuals with microtia and craniofacial microsomia and their families: Narrative review over two decades
L Johns, Alexis; Stock, Nicola M.; Costa, Bruna; B Feragen, Kristin; E Crerand, Canice
Authors
Nicola Stock Nicola2.Stock@uwe.ac.uk
Occasional Associate Lecturer - CHSS - HSS
Bruna Oliveira Costa Bruna.Oliveiracosta@uwe.ac.uk
Casual Research Administrator - HAS
Kristin B Feragen
Canice E Crerand
Abstract
Objective: This paper describes 20 years of microtia and craniofacial microsomia (CFM) psychosocial and healthcare studies and suggests directions for clinical care and research. Design: A narrative review of papers January 2000 to July 2021 related to psychosocial and healthcare experiences of individuals with microtia and CFM and their families. Results: Studies (N = 64) were mainly cross-sectional (69%), included a range of standardized measures (64%), and were with European (31%), American (27%), or multinational (23%) samples. Data were generally collected from both patients and caregivers (38%) or patient self-report (35%). Sample sizes were 11 to 25 (21%), 26 to 50 (19%), 51 to 100 (22%), or over 100 (38%). Studies addressed 5 primary topics: (1) Healthcare Experiences, including Medical Care, Hearing Loss/Amplification, Diagnostic Experiences, and Information Preferences; (2) Psychosocial Experiences, including Teasing, Behavioral Adjustment, Psychosocial Support, and Public Perception; (3) Neurocognitive Functioning and Academic Assistance; (4) Pre- and Post-Operative Psychosocial Outcomes of Ear Reconstruction/Canaloplasty; and (5) Quality of Life and Patient Satisfaction. Conclusions: Care involved multiple specialties and was often experienced as stressful starting at diagnosis. Psychosocial and neurocognitive functioning were generally in the average range, with possible risk for social and language concerns. Coping and resiliency were described into adulthood. Satisfaction and positive benefit of ear reconstruction/canaloplasty were high. Care recommendations include increasing: hearing amplification use, microtia and CFM knowledge among providers, efficient treatment coordination, psychosocial support, academic assistance, and advances to minimize surgical scarring. This broad literature overview informs clinical practice and research to improve psychosocial outcomes.
Journal Article Type | Article |
---|---|
Acceptance Date | Mar 15, 2022 |
Online Publication Date | Apr 5, 2022 |
Publication Date | Sep 30, 2023 |
Deposit Date | Mar 21, 2022 |
Publicly Available Date | May 5, 2022 |
Journal | Cleft Palate-Craniofacial Journal |
Print ISSN | 1055-6656 |
Electronic ISSN | 1545-1569 |
Publisher | SAGE Publications |
Peer Reviewed | Peer Reviewed |
Volume | 60 |
Issue | 9 |
Pages | 1090-1112 |
DOI | https://doi.org/10.1177/10556656221091699 |
Public URL | https://uwe-repository.worktribe.com/output/9228772 |
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Psychosocial and health-related experiences of individuals with microtia and craniofacial microsomia and their families: Narrative review over two decades
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L Johns, A., Stock, N. M., Costa, B., B Feragen, K., & E Crerand, C. (2023). Psychosocial and health-related experiences of individuals with microtia and craniofacial microsomia and their families: Narrative review over two decades. Cleft Palate-Craniofacial Journal, 60(9), 1090-1112. Copyright © 2022 Sage Publications. https://doi.org/10.1177/10556656221091699
Psychosocial and health-related experiences of individuals with microtia and craniofacial microsomia and their families: Narrative review over two decades
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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
L Johns, A., Stock, N. M., Costa, B., B Feragen, K., & E Crerand, C. (2023). Psychosocial and health-related experiences of individuals with microtia and craniofacial microsomia and their families: Narrative review over two decades. Cleft Palate-Craniofacial Journal, 60(9), 1090-1112. Copyright © 2022 Sage Publications. https://doi.org/10.1177/10556656221091699.
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Copyright © 2022 Sage Publications. https://doi.org/10.1177/10556656221091699
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