Parents' Experiences of Affiliate Stigma when Caring for a Child with Autism Spectrum Disorder (ASD): A Meta-Synthesis of Qualitative Studies

J Pediatr Nurs. 2020 Nov-Dec:55:174-183. doi: 10.1016/j.pedn.2020.09.002. Epub 2020 Sep 18.

Abstract

Problem: Stigma affects not only children diagnosed with autism spectrum disorder (ASD) themselves, but also people connected with them (i.e., parents, siblings). The capacity of parents to provide care is affected by the stigma they perceive. This meta-synthesis encompasses the experiences of affiliate stigma among parents of children with ASD.

Eligibility criteria: Articles were limited to the English language, those reported on stigma experienced by parents of children with ASD aged 2-18 years, published between 1940 and 2019.

Sample: PubMed, CINAHL, PsycINFO, EMBASE, Scopus and The Cochrane Library databases were searched for eligible studies. Titles and abstracts were reviewed, and twelve articles fitted the selection criteria. The texts of the selected research papers were reviewed by two independent reviewers.

Results: Four common themes across parental experiences included felt stigma, enacted stigma, variations in stigma, and contributors to stigmatizing experiences.

Conclusions: Highlighting the differences in parents' views on affiliate stigma is necessary to create awareness about ASD and the stigma linked with this disorder.

Implications: The findings asserted that healthcare professionals, especially those in pediatric settings, and society need to have a greater awareness of the stigma and challenges that these parents encounter as this has implications on their mental and physical health. This awareness will lead to more compassionate health care delivery which will support them and create a better environment for families and children with ASD.

Keywords: Affiliate stigma; Autism spectrum disorder; Child; Parent; Stigma.

Publication types

  • Review

MeSH terms

  • Adolescent
  • Autism Spectrum Disorder*
  • Child
  • Child, Preschool
  • Humans
  • Parent-Child Relations
  • Parents
  • Qualitative Research
  • Social Stigma