Centre for Appearance Research, University of the West of England, Coldharbour Lane, Bristol, BS16 1QY, UK.
Headlines Craniofacial Support, St Albans, Hertfordshire, UK.
Cleft Palate Craniofac J. 2023 Oct;60(10):1284-1297. doi: 10.1177/10556656221102043. Epub 2022 Jul 3.
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.
An online UK-wide mixed-methods survey was distributed to members of Headlines Craniofacial Support.
Quantitative data including standardized measures were analysed using descriptive statistics and independent samples -tests, and inductive content analysis was used for open-ended questions.
Mothers (n = 109) and fathers (n = 9) of individuals ages 3 months to 49 years with single suture (63%) or syndromic (33%) craniosynostosis participated.
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.
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.
尽管人们对颅面畸形的心理社会影响的认识不断提高，但关于其对父母影响的文献仍然有限。患有健康状况的儿童的父母可能面临一系列心理社会挑战的风险。本研究对颅缝早闭患者父母的心理社会适应情况进行了初步调查，以为家庭提供支持。
在英国范围内，通过在线方式向 Headlines Craniofacial Support 的成员分发了一项混合方法的问卷调查。
使用描述性统计和独立样本 t 检验对包括标准化量表在内的定量数据进行分析，并对开放式问题进行归纳内容分析。
3 个月至 49 岁患有单一颅缝（63%）或综合征性（33%）颅缝早闭的个体的母亲（n=109）和父亲（n=9）参与了研究。
与一般人群相比，颅缝早闭患者的父母报告了更高水平的压力、焦虑和抑郁；较低的韧性和乐观水平。定性回复提供了对父母在出生、诊断、医疗保健提供、家庭幸福感和关系方面经历的深入了解。父母报告了一些未满足的信息和支持需求，以及一系列积极的结果。
本研究说明了颅缝早闭儿童父母可能长期存在的心理社会影响。有必要对家庭成员进行常规的心理筛查，并为有心理困扰风险的人提供适当的心理支持。非专科卫生专业人员可能受益于关于颅面疾病的额外培训，以便更好地为家庭提供支持和转介。
