Cooke Emma, Smith Valerie, Brenner Maria
Trinity College Dublin, Dublin, Ireland.
BMC Pediatr. 2020 May 22;20(1):244. doi: 10.1186/s12887-020-02045-5.
Population prevalence estimates by the World Health Organisation suggest that 1 in 160 children worldwide has an Autism Spectrum Disorder (ASD). Accessing respite care services for children with an ASD can often be a daunting and exhaustive process, with parents sometimes forced to access acute hospital services as an initial point of contact for respite care or in a crisis situation. To gain an in-depth understanding of accessing respite care for children with an ASD, from the perspectives of parents, a systematic review of the evidence on parent's experiences and views of respite care for children with an ASD at the acute and primary interface was undertaken.
Pubmed, Embase, CINAHL and PsycINFO were systematically searched. Studies identified as relevant based on predetermined eligibility criteria were selected for inclusion. The search strategy also targeted unpublished studies and grey literature. Qualitative data and qualitative components of mixed method studies that represented the experiences of parents accessing respite care for children with an ASD were eligible for inclusion. A meta-aggregative approach was used during data synthesis.
Database searching elicited 430 records of which 291 studies remained after removal of duplicates. These 291 studies were screened for title and abstract by two reviewers resulting in 31 studies to be screened at full text and assessed for eligibility. Six studies met the inclusion criteria and a further additional study also met the inclusion criteria during a manual search. As a result, 7 studies were selected for the review as set out in Fig. 1.
In the absence of appropriate services and defined pathways to support services such as respite care, overwhelmed parents and community providers of mental health resources may not be in a position to meet the specific needs of children with an ASD and their families which may be contributing to a direct increase in hospitalizations. This systematic review identified a number of barriers to respite care, of which the findings can be used to inform future service development and further research. Knowledge of parental experiences in caring for a child with an ASD is vital in addressing the need and type of respite care required for children with an ASD.
PROSPERO CRD42018106629.
世界卫生组织的人口患病率估计表明，全球每160名儿童中就有1名患有自闭症谱系障碍（ASD）。为患有自闭症谱系障碍的儿童获得喘息护理服务通常是一个艰巨且令人疲惫的过程，家长有时被迫将急症医院服务作为喘息护理的初始联系点或在危机情况下使用。为了从家长的角度深入了解为患有自闭症谱系障碍的儿童获得喘息护理的情况，对急症和初级医疗界面中家长对患有自闭症谱系障碍儿童喘息护理的经历和看法的证据进行了系统综述。
系统检索了PubMed、Embase、CINAHL和PsycINFO。根据预先确定的纳入标准，选择被确定为相关的研究纳入。检索策略还针对未发表的研究和灰色文献。代表家长为患有自闭症谱系障碍的儿童获得喘息护理经历的定性数据和混合方法研究的定性部分符合纳入条件。数据综合过程中采用了元聚合方法。
数据库检索得到430条记录，去除重复项后剩下291项研究。两名评审员对这291项研究进行了标题和摘要筛选，结果有31项研究需进行全文筛选并评估其纳入资格。6项研究符合纳入标准，在手动检索过程中又有1项研究符合纳入标准。因此，如图1所示，选择了7项研究进行综述。
在缺乏适当服务以及诸如喘息护理等支持服务的明确途径的情况下，不堪重负的家长和社区心理健康资源提供者可能无法满足患有自闭症谱系障碍的儿童及其家庭的特殊需求，这可能导致住院人数直接增加。这项系统综述确定了喘息护理的一些障碍，其研究结果可用于为未来的服务发展和进一步研究提供信息。了解家长照顾患有自闭症谱系障碍儿童的经历对于满足患有自闭症谱系障碍儿童所需的喘息护理的需求和类型至关重要。
PROSPERO CRD42018106629。
