Lived Experiences of Iranian Parents of Children with Autism Spectrum Disorder: A Systematic Review

Ehsan  Jamshidian; Elahe  Hojati Abed; Hossein  Sourtiji; Elahe  Fathi Azar; Mozhdeh  Hashemzadeh; Hooshang  Mirzaie

doi:10.18502/ijph.v52i8.13401

Ehsan Jamshidian Department of Occupational Therapy, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran
Elahe Hojati Abed Department of Occupational Therapy, School of Rehabilitation Sciences, Iran University of Medical Sciences, Tehran, Iran
Hossein Sourtiji Department of Occupational Therapy, School of Rehabilitation Sciences, Isfahan University of Medical Sciences, Isfahan, Iran
Elahe Fathi Azar Department of Occupational Therapy, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran
Mozhdeh Hashemzadeh Department of Medical Library and Information Science, School of Management and Medical Information Sciences, Isfahan University of Medical Sciences, Isfahan, Iran
Hooshang Mirzaie Department of Occupational Therapy, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran

DOI: https://doi.org/10.18502/ijph.v52i8.13401

Keywords: Autism; Parents; Qualitative; Systematic review

Abstract

Background: Autism is a lifelong condition that seriously affects many aspects of children's and families' lives. The experience attained by living with a child with autism can be a valuable source of information to provide support and satisfactory services to children with autism and their families. We aimed to investigate the lived experiences of Iranian parents of children with autism.

Methods: The search was conducted in PubMed, Web of Science, Embase, Google Scholar, CINAHL, PsychInfo, SID, and Magiran until Nov 2021. Two reviewers screened the articles, applied inclusion criteria, critically evaluated articles using the Critical Appraisal Skills Program (CASP), and extracted study details according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist. Thematic synthesis was used to analyze included studies.

Results: From 2772 articles in the initial search, sixteen studies entered the final analysis. Four themes emerged, including treatment-related lived experience, individual lived experience, social lived experience, and occupational lived experience. Iranian parents of children with autism are confronted with negative experiences, including inaccurate diagnostic processes, lack of adequate support at the diagnosis time, low-quality treatment, psychological problems, and concern about the child's future. Also, Parent's experiences showed family problems, stigma, and problems with doing occupations.

Conclusion: Practitioners, policy-makers, and regulatory organizations should urgently consider issues mentioned in the parents' experiences to provide proper healthcare services for children with autism and their families.