Department of Pediatrics and
Department of Pediatrics, Harvard Medical School, Harvard University, Boston, Massachusetts.
Pediatrics. 2020 Apr;145(Suppl 1):S60-S71. doi: 10.1542/peds.2019-1895I.
Families of children with autism spectrum disorder (ASD) often experience challenges navigating multiple systems to access services. Family navigation (FN) is a model to provide information and support to access appropriate services. Few studies have been used to examine FN's effectiveness for families of children with ASD. This study used mixed methods to (1) characterize FN services received by a sample of families in the Autism Treatment Network; (2) examine change in parent-reported activation, family functioning, and caregiver strain; and (3) explore families' experiences with FN services.
Family characteristics and parent outcomes including parent activation, family functioning, and caregiver strain were collected from 260 parents in the Autism Treatment Network. Descriptive statistics and linear mixed models were used for aims 1 and 2. A subsample of 27 families were interviewed about their experiences with FN services to address aim 3.
Quantitative results for aims 1 and 2 revealed variability in FN services and improvement in parent activation and caregiver strain. Qualitative results revealed variability in family experiences on the basis of FN implementation differences (ie, how families were introduced to FN, service type, intensity, and timing) and whether they perceived improved skills and access to resources.
Findings suggest FN adaptations occur across different health care delivery systems and may result in highly variable initial outcomes and family experiences. Timing of FN services and case management receipt may contribute to this variability for families of children with ASD.
自闭症谱系障碍（ASD）儿童的家庭在多个系统中寻求服务时常常面临挑战。家庭导航（FN）是一种提供信息和支持以获取适当服务的模式。很少有研究用于检验 FN 对 ASD 儿童家庭的有效性。本研究采用混合方法：（1）描述自闭症治疗网络中一组家庭接受的 FN 服务；（2）考察家长报告的激活、家庭功能和照顾者压力的变化；（3）探索家庭对 FN 服务的体验。
自闭症治疗网络中的 260 名家长提供了家庭特征和家长结果，包括家长激活、家庭功能和照顾者压力。目的 1 和 2 的描述性统计和线性混合模型用于分析。对 27 个家庭的子样本进行了关于 FN 服务体验的访谈，以解决目的 3。
目的 1 和 2 的定量结果显示 FN 服务存在差异，家长激活和照顾者压力得到改善。定性结果表明，根据 FN 实施差异（即家庭如何接触 FN、服务类型、强度和时间）以及他们是否认为技能得到提高和获得资源，家庭体验存在差异。
研究结果表明，FN 适应在不同的医疗保健提供系统中发生，并且可能导致高度可变的初始结果和家庭体验。FN 服务和个案管理的时间可能是 ASD 儿童家庭这种差异的原因。
