Mirza M, Krischer A, Stolley M, Magaña S, Martin M
Department of Occupational Therapy, University of Illinois at Chicago, Chicago, IL, USA.
Department of Medicine, Medical College of Wisconsin, Milwaukee, WI, USA.
Child Care Health Dev. 2018 May;44(3):401-426. doi: 10.1111/cch.12554. Epub 2018 Feb 27.
A large number of U.S. children are identified as having special health care needs (CSHCN). Despite parents' central role in managing their child's needs, many parents report difficulties in navigating service systems, finding information about their child's condition, and accessing health care and community resources. Therefore, there is a need for interventions that "activate" parents of children with special health care needs to increase their knowledge, skills, and confidence in managing, coordinating, and advocating for their child's needs. This study sought to review the existing literature and examine the effects of parent support interventions that focus on parental activation either in part or whole, on child, parent, or family outcomes. Specific aims included (a) summarizing the nature and content of interventions; (b) describing changes in relevant outcomes; (c) identifying limitations and making recommendations for future research.
Following electronic databases were searched: MEDLINE, EMBASE, PsycINFO via ProQuest, PubMed, Cumulative Index to Nursing and Allied Health via EBSCO, Education Resources Information Center (ERIC) via ProQuest, The Cochrane Library (Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, Cochrane Methodology Register), and Google Scholar. Twenty-two studies were selected, data were extracted, and quality was assessed using standardized procedures.
Five intervention categories were identified: parent-to-parent supports, psycho-educational groups, content-specific groups, community health worker model, and self-management-based interventions. Although most studies showed positive effects of the intervention, evidence was inconsistent for parental outcomes such as self-efficacy, confidence, strain, depression, and perceived social support. Evidence was more consistent in showing improvement in parent coping and in use of community-based services and resources.
There is a need to boost active ingredients of interventions that specifically target enhancing parent skill sets relevant to areas of self-efficacy, confidence, and empowerment. Future studies must also adapt intervention and study design to recruit socioeconomically vulnerable families.
大量美国儿童被认定有特殊医疗需求（患有特殊医疗需求的儿童）。尽管家长在满足孩子需求方面起着核心作用，但许多家长表示在应对服务系统、获取孩子病情信息以及获得医疗保健和社区资源方面存在困难。因此，需要采取干预措施来“激活”有特殊医疗需求儿童的家长，以增强他们在管理、协调和倡导满足孩子需求方面的知识、技能和信心。本研究旨在回顾现有文献，并考察部分或全部聚焦于家长激活的家长支持干预措施对儿童、家长或家庭结局的影响。具体目标包括：（a）总结干预措施的性质和内容；（b）描述相关结局的变化；（c）识别局限性并为未来研究提出建议。
检索了以下电子数据库：通过ProQuest检索MEDLINE、EMBASE、PsycINFO，通过PubMed检索，通过EBSCO检索护理及相关健康累积索引，通过ProQuest检索教育资源信息中心（ERIC），检索Cochrane图书馆（Cochrane系统评价数据库、Cochrane对照试验中心注册库、Cochrane方法学注册库）以及谷歌学术。选取了22项研究，提取数据，并使用标准化程序评估质量。
确定了五类干预措施：家长对家长支持、心理教育小组、特定内容小组、社区卫生工作者模式以及基于自我管理的干预措施。尽管大多数研究显示干预措施有积极效果，但关于家长结局如自我效能感、信心、压力、抑郁和感知到的社会支持等方面的证据并不一致。在显示家长应对能力改善以及基于社区的服务和资源使用方面的证据更为一致。
有必要强化干预措施的有效成分，这些干预措施应专门针对提升与自我效能感、信心和赋权相关领域的家长技能。未来研究还必须调整干预措施和研究设计，以招募社会经济弱势家庭。
