"When I was Younger, My Story Belonged to Everyone Else": Co-production of Resources for Adults Living with Craniosynostosis.

OBJECTIVE: Despite growing recognition that congenital craniofacial conditions have lifelong implications, psychological support for adults is currently lacking. The aim of this project was to produce a series of short films about living with craniosynostosis in adulthood, alongside a psychoeducational booklet. DESIGN: The resources were developed using multiple focus groups and meetings attended by researchers, patient representatives, a leading charitable organisation, an award-winning film production company, clinicians, and other experts in the field. RESULTS: An online mixed-methods survey was developed based on prior work to request feedback on the acceptability and utility of the resources from the craniosynostosis community. While data collection to evaluate the resources is ongoing, preliminary results (n = 36) highlight an acceptability rating of 100%. CONCLUSIONS: The resources developed represent a step forward in addressing the unmet information and support needs of adults with craniosynostosis and highlight the benefits of co-production in research.

Raising a Child with Craniosynostosis: Psychosocial Adjustment in Caregivers.

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.

Psychological and Physical Health Outcomes in Adults With Craniosynostosis.

OBJECTIVES: Within current research, little is known about the long-term outcomes of craniosynostosis. A priority-setting exercise by UK charity Headlines Craniofacial Support identified 2 key questions in this area: (1) What are the long-term physical and psychological effects for individuals with syndromic and non-syndromic craniosynostosis? and (2) Are individuals with craniosynostosis likely to suffer from mental health difficulties, or are they more resilient? The aim of the current study was to conduct an initial investigation of these priority questions. METHODS: A comprehensive UK-wide survey consisting of 9 standardized psychological outcome measures and open-ended questions was distributed online. Thirty-six eligible adults (69.4% female) with a mean age of 30.8 years responded to the survey. Participants reported having single suture craniosynostosis (27.8%) or syndromic craniosynostosis (52.8%), with 19.4% being unsure of their diagnosis. Sample means were compared to published norms using independent samples t tests. Qualitative responses were analysed using inductive content analysis. RESULTS: Compared to the general population, participants reported significantly less favorable scores related to appearance concerns, attachment in adult relationships, anxiety, optimism, and resilience. Self-worth, depression, and social anxiety scores were similar to norms. Qualitative responses provided additional insight into participants' satisfaction with appearance, physical health, medical treatment, employment, relationships, and recurrence risks. Few participants had accessed psychological support. DISCUSSION: This preliminary study illustrates the potential long-term implications for individuals with craniosynostosis. Improved treatment protocols are needed to address physical health concerns in adulthood, while dedicated psychological resources are necessary to promote emotional well-being, social confidence, and resilience.

A Booklet to Promote Psychological Health in New Families Affected by Craniosynostosis.

ABSTRACT: Recent research indicates that parents of children with craniosynostosis may be at risk of emotional distress. Yet, parents may not be accessing the support they need to cope with common challenges. The aim of this project was to develop a research-informed booklet to promote psychological health in new families, and to assess acceptability of the booklet within the craniosynostosis community. The first draft was designed in close collaboration with leading UK charity Headlines Craniofacial Support 5 parent representatives, and 3 specialist clinical psychologists via online focus groups. The draft booklet, attached to an online acceptability survey, was distributed to a broader group of parents and multidisciplinary specialists working in craniofacial teams in England for feedback. A total of 44 complete responses to the online acceptability survey were received. Acceptability (measured by the number of respondents who would recommend the booklet) was 100%. All respondents reported they "agreed" or "strongly agreed" with the UK-wide distribution of the booklet. Evidence for psychological intervention in the craniofacial field remains scarce, and specialist teams may be under-resourced to effectively screen and support parents. It is hoped this booklet will begin to address the gap in psychological support for new families affected by craniosynostosis.