Abstract

Objective

The current study examined reported patterns of utilization and barriers to early and school-age interventions, as well as directions for future care, among families of children with congenital or neonatal conditions with known-risk for poor neurocognitive development. The impact of the child’s severity of injury, condition and adaptive functioning, as well as family sociodemographic factors were considered.

Methods

The sample included 62 parents (53 mothers, 5 fathers, 4 mother-father pairs) of children diagnosed with neonatal stroke, hypoxia ischemic encephalopathy (HIE), and congenital heart disease (CHD) ranging in age between 3 to 9 years (mean age = 4.5 years, SD = 1.82).

Results

In this sample, approximately 80% of children were reported to have had utilized one or more therapies. The most frequent services utilized included: (a) speech and language therapy, (b) occupational therapy, and (c) physical therapy. Less than 10% of sample reported utilizing any psychological therapies. Common family barriers to all interventions included time off work, lack of childcare, and transportation. Parents of children with more severe injury or condition reported that their children were utilizing a greater number of interventions and also perceived a greater number of barriers. Over half of the parents expressed a need for more parent support groups, remote psychosocial services, and individualized psychological therapy for themselves or their family.

Conclusions

Findings highlight patterns of utilization and perceived gaps in early and school-age interventions for children with congenital or neonatal conditions that impact neurodevelopment. Direction for clinical care and improved intervention opportunities are discussed.

中文翻译：

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先天性和新生儿性疾病影响大脑发育的儿童的干预经验：服务利用方式，障碍和未来方向

摘要

目的

本研究调查了患有先天性或新生儿状况且神经认知发育不良风险的儿童家庭中利用模式和早期及学龄干预的障碍以及未来护理的方向。考虑了孩子受伤程度，状况和适应功能以及家庭社会人口统计学因素的影响。

方法

该样本包括62例被诊断患有新生儿中风，缺氧缺血性脑病（HIE）和先天性心脏病（CHD）的儿童（平均年龄为3至9岁）（53名母亲，5名父亲，4对父母）。 = 4.5年，SD = 1.82）。

结果

在该样本中，据报道大约80％的儿童已使用一种或多种疗法。使用最频繁的服务包括：（a）言语和语言治疗，（b）职业治疗和（c）物理治疗。少于10％的样本报告使用了任何心理疗法。家庭对所有干预措施的共同障碍包括休假，缺乏育儿和交通。患有更严重伤害或状况的孩子的父母报告说，他们的孩子正在采用更多的干预措施，并且也感觉到更多的障碍。超过一半的父母表示需要更多的父母支持小组，远程心理社会服务以及针对自己或家人的个性化心理治疗。

结论

研究结果突显了先天性或新生儿疾病影响神经发育的儿童在早期和学龄期干预中的利用方式和感知的差距。讨论了临床护理方向和改善的干预机会。