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A conceptual thematic framework of psychological adjustment in caregivers of children with craniofacial microsomia

Stock, Nicola M.; Costa, Bruna; Parnell, Jade; Johns, Alexis; Crerand, Canice; Feragen, Kristin; Stueckle, Laura; Mills, Angela; Magee, Leanne; Hotton, Matthew; Tumblin, Melissa; Schefer, Amy; Drake, Amelia; Heike, Carrie

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Authors

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

Bruna Costa

Jade Parnell

Alexis Johns

Canice Crerand

Kristin Feragen

Laura Stueckle

Angela Mills

Leanne Magee

Matthew Hotton

Melissa Tumblin

Amy Schefer

Amelia Drake

Carrie Heike



Abstract

Objective: Children with craniofacial microsomia (CFM) have complex healthcare needs, resulting in evaluations and interventions from infancy onward. Yet, little is understood about families’ treatment experiences or the impact of CFM on caregivers’ well-being. To address this gap, the NIH-funded ‘Craniofacial microsomia: Accelerating Research and Education (CARE)’ program sought to develop a conceptual thematic framework of caregiver adjustment to CFM. Design: Caregivers reported on their child's medical and surgical history. Narrative interviews were conducted with US caregivers (n = 62) of children aged 3-17 years with CFM. Transcripts were inductively coded and final themes and subthemes were identified. Results: Components of the framework included: 1) Diagnostic Experiences, including pregnancy and birth, initial emotional responses, communication about the diagnosis by healthcare providers, and information-seeking behaviors; 2) Child Health and Healthcare Experiences, including feeding, the child's physical health, burden of care, medical decision-making, surgical experiences, and the perceived quality of care; 3) Child Development, including cognition and behavior, educational provision, social experiences, and emotional well-being; and 4) Family Functioning, including parental well-being, relationships, coping strategies, and personal growth. Participants also identified a series of “high” and “low” points throughout their journey and shared their priorities for future research. Conclusions: Narrative interviews provided rich insight into caregivers’ experiences of having a child with CFM and enabled the development of a conceptual thematic framework to guide clinical care and future research. Information gathered from this study demonstrates the need to incorporate evidence-based psychological support for families into the CFM pathway from birth onward.

Citation

Stock, N. M., Costa, B., Parnell, J., Johns, A., Crerand, C., Feragen, K., …Heike, C. (in press). A conceptual thematic framework of psychological adjustment in caregivers of children with craniofacial microsomia. Cleft Palate-Craniofacial Journal, https://doi.org/10.1177/10556656241245284

Journal Article Type Article
Acceptance Date Mar 18, 2024
Online Publication Date Apr 8, 2024
Deposit Date Mar 18, 2024
Publicly Available Date May 9, 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/10.1177/10556656241245284
Keywords Otorhinolaryngology, Oral Surgery
Public URL https://uwe-repository.worktribe.com/output/11826012

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