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. 2025 Jul;62(7):1228-1240.
doi: 10.1177/10556656241245284. Epub 2024 Apr 8.

A Conceptual Thematic Framework of Psychological Adjustment in Caregivers of Children with Craniofacial Microsomia

Nicola M Stock  1 , Bruna Costa  1 , Jade Parnell  1 , Alexis L Johns  2 , Canice E Crerand  3 , Kristin Billaud Feragen  4 , Laura P Stueckle  5 , Angela Mills  5 , Leanne Magee  6 , Matthew Hotton  7 , Melissa Tumblin  5 , Amy Schefer  5 , Amelia F Drake  8 , Carrie L Heike  5
Affiliations

A Conceptual Thematic Framework of Psychological Adjustment in Caregivers of Children with Craniofacial Microsomia

Nicola M Stock et al. Cleft Palate Craniofac J. 2025 Jul.

Abstract

ObjectiveChildren 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.DesignCaregivers 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.ResultsComponents 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.ConclusionsNarrative 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.

Keywords: craniofacial microsomia; evidence-based practice; familial adjustment; feeding; maternal factors; mental health support; parental perception; psychosocial adjustment; quality of life; team care.

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Conflict of interest statement

Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1:
Figure 1:
A Conceptual Thematic Framework of Psychological Adjustment in Caregivers of Children with Craniofacial Microsomia
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