Abstract

Caring for the complex needs of a child with congenital heart disease (CHD) can place significant burden on the family. Parent mental health and coping have important influences on resilience and neurodevelopmental outcomes in children with CHD. Objectives: To describe the uptake of a cardiac neurodevelopmental program (CNP), examine parent mental health and coping specific to parenting a child with CHD, and explore the relationship between parent mental health and child neurodevelopmental outcomes. Method: Implementation and uptake of the CNP was examined, and forty-four parents of children with CHD completed the DASS and RSQ-CHD. Results: The CNP showed significant uptake in follow-up and interventions offered including 100% completed brain MRIs of eligible patients, 35% increase in neonatal neurology consults, and 100% of families counselled on neurodevelopmental outcomes. A significant proportion of parents endorsed moderate/severe levels of anxiety (25%), depression (20%), and CHD-specific stress. Parents predominantly engaged in secondary control engagement coping (F(2,64)=75.04, p<.001, η_p²=.70). Secondary control engagement coping was associated with lower parent total stress (r=–.48, p=.006) and anxiety (r=–.47, p=.009). Higher parent stress was associated with higher anxiety (r=.45, p=.016), depression (r=.37, p=.05), more severe types of CHD (r=.35, p=.048), older child age (t(30)= –2.33, p=.03), and lower child cognitive scores (r=–.37, p=.045). More severe types of CHD were associated with lower language scores (F(3,35)=3.50, p=.03). Conclusions: This study highlights the relationship between parent mental health and early child cognitive outcomes in CHD and helps inform models of psychological care to reduce family burden and improve child outcomes.

摘要

照顾先天性心脏病 (CHD) 儿童的复杂需求会给家庭带来沉重的负担。父母的心理健康和应对方式对 CHD 儿童的心理弹性和神经发育结果有重要影响。目的：描述心脏神经发育计划 (CNP) 的应用，检查父母的心理健康和应对先天性心脏病儿童的具体情况，并探讨父母心理健康与儿童神经发育结果之间的关系。方法：检查了 CNP 的实施和吸收，44 名 CHD 儿童的父母完成了 DASS 和 RSQ-CHD。结果：CNP 在随访和提供的干预措施中表现出显着的接受度，包括 100% 完成符合条件的患者的脑部 MRI，新生儿神经病学咨询增加 35%，以及 100% 的家庭就神经发育结果进行咨询。很大一部分家长赞同中度/重度焦虑 (25%)、抑郁 (20%) 和冠心病特有的压力。父母主要从事二级控制参与应对 (F(2,64)=75.04, p <.001, η _p ² =.70)。二级控制参与应对与较低的父母总压力 ( r =–.48, p =.006) 和焦虑 ( r =–.47, p =.009) 相关。较高的父母压力与较高的焦虑有关（r=.45, p =.016)、抑郁症 ( r =.37, p =.05)、更严重的 CHD 类型 ( r =.35, p =.048)、年龄较大的儿童 ( t (30)= – 2.33, p =.03)，以及较低的儿童认知评分 ( r =–.37, p =.045)。更严重的 CHD 类型与较低的语言分数相关 (F(3,35)=3.50, p =.03)。结论：本研究强调了父母心理健康与 CHD 早期儿童认知结果之间的关系，并有助于为心理护理模型提供信息，以减轻家庭负担和改善儿童结果。