Parents' and guardians' experiences of barriers and facilitators in accessing autism spectrum disorder diagnostic services for their children: a qualitative systematic review.

IF 1.5 Q3 HEALTH CARE SCIENCES & SERVICES
Joanne Smith-Young, April Pike, Michelle Swab, Roger Chafe
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引用次数: 0

Abstract

Objective: The objectives of this review were to comprehensively identify the best available qualitative evidence about parents' and guardians' experiences of barriers and facilitators in accessing autism spectrum disorder (ASD) diagnostic services for their children; and to develop recommendations based on the review for addressing barriers to timely diagnosis and early intervention.

Introduction: Early identification of ASD is a priority because the best chance for improving symptoms occurs through early and intensive intervention. A definitive ASD diagnosis is often a prerequisite for children to access publicly funded services, yet obtaining a diagnosis in itself can be stressful, frustrating, and time-consuming for many families. It is essential to understand the barriers and facilitators parents and guardians face in accessing ASD diagnostic services for their children.

Inclusion criteria: This qualitative systematic review considered studies conducted worldwide that included parents and guardians of children up to 18 years of age who had accessed or who were attempting to access ASD diagnostic services for their children.

Methods: This review was conducted in accordance with the JBI methodology for systematic reviews of qualitative evidence. A literature search included CINAHL (EBSCOhost), CINAHL Plus (EBSCOhost), MEDLINE (EBSCOhost), APA PsycINFO (EBSCOhost), Social Services Abstracts (ProQuest), ERIC (EBSCOhost), and Embase. Gray literature sources included ProQuest Dissertations and Theses, Google Scholar, Google, OpenGrey, other online resources (government and organizational websites), and reference lists of retrieved records. No language, date, or country limits were applied to the searches. Retrieved records from the academic databases, gray literature, and reference lists of retrieved records were screened, with potentially relevant records examined in full against the inclusion criteria. Eligible studies were critically appraised for methodological quality and those included in this review were subjected to data extraction of descriptive details and study findings relevant to the review question. Study findings were synthesized and assigned confidence scores. All reviewers agreed upon the categories and finalized synthesized findings.

Results: The 36 included studies varied in qualitative research designs with high methodological quality. There were approximately 661 eligible participants, and 55 credible and unequivocal research findings. The research findings yielded 6 categories and 3 synthesized findings with moderate confidence scores. Parents' and guardians' ability to access ASD diagnostic services for their children is affected by i) encountering health care providers who actively listened to and addressed parents' and guardians' concerns instead of dismissing them, providing a sense of support and validation; ii) facing extended waiting times and associated financial burdens resulting in frustration and associated financial impact when delays occurred; and iii) encountering health care providers lacking specialized knowledge about ASD contributing to parents' and guardians' confusion due to inaccurate or conflicting diagnoses related to ASD comorbidities.

Conclusion: Many parents described their journey in accessing ASD assessment and diagnostic services for their children as cumbersome. Parents' and guardians' experiences were affected by the level of perceived support by and knowledge of health care providers; confusion surrounding inaccurate/mixed diagnoses related to ASD; lengthy delays; and systemic and contextual barriers in navigating the pathway to ASD assessment and diagnosis that included socioeconomic and cultural disparities.

Review registration: PROSPERO CRD42018100127.

家长和监护人在为子女获得自闭症谱系障碍诊断服务时遇到的障碍和促进因素:定性系统综述。
目的:本综述的目的是全面确定家长和监护人在为其子女获得自闭症谱系障碍(ASD)诊断服务时遇到的障碍和促进因素方面的现有最佳定性证据;并在综述的基础上提出建议,以解决及时诊断和早期干预的障碍:早期识别自闭症谱系障碍是当务之急,因为早期强化干预是改善症状的最佳途径。明确的 ASD 诊断通常是儿童获得政府资助服务的先决条件,但获得诊断本身就会给许多家庭带来压力、挫折和耗费时间。了解家长和监护人在为其子女获得 ASD 诊断服务时所面临的障碍和促进因素至关重要:本定性系统综述考虑了在全球范围内开展的研究,这些研究的对象包括 18 岁以下儿童的家长和监护人,他们已经或正试图为其子女获得 ASD 诊断服务:本综述根据 JBI 定性证据系统综述方法进行。文献检索包括 CINAHL (EBSCOhost)、CINAHL Plus (EBSCOhost)、MEDLINE (EBSCOhost)、APA PsycINFO (EBSCOhost)、Social Services Abstracts (ProQuest)、ERIC (EBSCOhost) 和 Embase。灰色文献来源包括 ProQuest Dissertations and Theses、Google Scholar、Google、OpenGrey、其他在线资源(政府和组织网站)以及检索记录的参考文献列表。搜索没有语言、日期或国家限制。对从学术数据库、灰色文献和参考文献列表中检索到的记录进行筛选,并根据纳入标准对可能相关的记录进行全面审查。对符合条件的研究进行严格的方法学质量评估,并对纳入本综述的研究进行数据提取,提取与综述问题相关的描述性细节和研究结果。对研究结果进行综合并给予置信度评分。所有审稿人都同意对研究结果进行分类并最终确定综合结果:纳入的 36 项研究的定性研究设计各不相同,方法质量较高。约有 661 名符合条件的参与者,55 项研究结果可信且明确。研究结果产生了 6 个类别和 3 个综合结果,可信度得分中等。家长和监护人为其子女获得 ASD 诊断服务的能力受到以下因素的影响:i) 遇到的医疗服务提供者积极倾听并解决家长和监护人的担忧,而不是将其置之不理,从而提供一种支持和认可感;ii) 面临漫长的等待时间和相关的经济负担,从而在出现延误时产生挫败感和相关的经济影响;iii) 遇到的医疗服务提供者缺乏有关 ASD 的专业知识,从而导致家长和监护人因与 ASD 合并症相关的不准确或相互矛盾的诊断而感到困惑:许多家长认为他们的孩子在接受 ASD 评估和诊断服务的过程中遇到了很多麻烦。家长和监护人的经历受到以下因素的影响:医疗服务提供者提供的支持和知识水平;与 ASD 相关的不准确/混合诊断带来的困惑;长时间的延误;在通往 ASD 评估和诊断的道路上遇到的系统性和背景性障碍,包括社会经济和文化差异:审查注册:PROCEMO CRD42018100127。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
JBI evidence synthesis
JBI evidence synthesis Nursing-Nursing (all)
CiteScore
4.50
自引率
3.70%
发文量
218
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