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

Abstract

Objective: The objectives of this review were to comprehensively identify the best available qualitative evidence on 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 and were assessed as having high methodological quality. There were 661 eligible participants, and 55 credible and unequivocal research findings were extracted. 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.