Raising a Child with Craniosynostosis: Psychosocial Adjustment in Caregivers

Abstract

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.