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Raising a child with Craniosynostosis: Psychosocial adjustment in parents

Costa, Bruna; Edwards, Wendy; Culshaw, Laura; Wilkinson-Bell, Karen; Stock, Nicola Marie

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Wendy Edwards

Laura Culshaw

Karen Wilkinson-Bell

Nicola Stock
Occasional Associate Lecturer - CHSS - HSS


Objective: While knowledge of the psychosocial impact of craniofacial conditions is growing, literature regarding the impact on parents remains limited. Parents of children born with a health condition may be at risk of experiencing a range of psychosocial challenges. This study conducted an initial investigation of psychosocial adjustment of parents of individuals with craniosynostosis to inform support provision for families. Setting: An online UK-wide mixed-methods survey was distributed to members of Headlines Craniofacial Support. Design: Quantitative data including standardized measures were analysed using descriptive statistics and independent samples t-tests, and inductive content analysis was used for open-ended questions. Participants: Mothers (n = 109) and fathers (n = 9) of individuals ages 3 months to 49 years with single suture (63%) or syndromic (33%) craniosynostosis participated. Results: Compared to the general population, parents of individuals with craniosynostosis reported higher levels of stress, anxiety, and depression; lower levels of resilience and optimism. Qualitative responses provided insight into parents’ experiences of birth, diagnosis, healthcare provision, familial wellbeing, and relationships. Parents reported several unmet information and support needs, alongside a range of positive outcomes. Conclusions: This study illustrates the potential long-term psychosocial implications for parents raising children with craniosynostosis. There is a need for routine psychological screening for family members and provision of appropriate psychological support for those at risk for distress. Non-specialist health professionals may benefit from additional training about craniofacial conditions so they are better equipped to support and refer families.


Costa, B., Edwards, W., Culshaw, L., Wilkinson-Bell, K., & Stock, N. M. (in press). Raising a child with Craniosynostosis: Psychosocial adjustment in parents. Cleft Palate-Craniofacial Journal, 105566562211020.

Journal Article Type Article
Acceptance Date Apr 29, 2022
Online Publication Date Jul 3, 2022
Deposit Date Aug 8, 2022
Publicly Available Date Aug 24, 2022
Journal Cleft Palate-Craniofacial Journal
Print ISSN 1055-6656
Electronic ISSN 1545-1569
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Pages 105566562211020
Keywords Otorhinolaryngology, Oral Surgery, Craniosynostosis, parents, mental health, wellbeing, resilience, psychosocial, craniofacial
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