The Psychosocial Support Needs of Parents of Children with Autism Spectrum Disorder (ASD) during the Diagnostic Process: A Systematic Review

Abstract

Title: The Psychosocial Support Needs of Parents of Children with Autism Spectrum Disorder (ASD) During the Diagnostic Process: A Systematic Review Background: The diagnostic process of autism is often an emotionally distressing experience. Parents go through intense mixed emotional responses. In addition to difficulties in accessing care, long waiting times, fragmented services, and lack of support impact the parents’ mental health and well-being. Despite the recognition of those ongoing challenges, there remains a limited in-depth understanding of the psychosocial support needs of parents from their own perspectives, particularly during the diagnostic process. Aim: The aim of this dissertation is to systematically review the literature on parents’ psychosocial support needs during the diagnostic process of children with ASD and to gain a comprehensive understanding of these needs. This will provide insights into how existing services can be improved to deliver high-quality, family- centered care. Methodology: A systematic search was conducted using four databases, including Medline, CINAHL, PsycINFO, and Embase. The search strategy was formulated to conduct a systematic search and identify relevant qualitative and mixed-method studies published between 2013 and 2024. Inclusion and exclusion criteria were applied, and study quality was assessed using the Critical Appraisal Skills Programme (CASP) tool and the Mixed Methods Appraisal Tool (MMAT). Thematic synthesis was conducted to analyse findings from the included studies. Results: A total of 11 studies met the inclusion criteria, with a combined sample of 233 parents. Five key themes emerged: (1) Emotional and Psychological Impact of Autism Diagnosis, (2) Cultural and Social Influences, (3) Family Strain and Social Adjustments, (4) Systemic Barriers in Autism Diagnosis and Support, and (5) Parents’ Perceived Support Needs and Coping Strategies. Conclusions: The ASD diagnostic process is an emotionally draining journey that requires collaboration and support from different networks. Although parents undergo huge distress, they remain strong advocates for their children and are eager to learn and adapt to provide better support. Policymakers and healthcare systems must work toward facilitating access to timely support services and to meet parents mental, social and financial needs.