Elsevier

Journal of Pediatric Nursing

Volume 55, November–December 2020, Pages 174-183
Journal of Pediatric Nursing

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

https://doi.org/10.1016/j.pedn.2020.09.002Get rights and content

Highlights

  • Parents reported experiencing stigma, blame, judgment and embarrassment due to their children's behavior.

  • Avoidance, rude comments or reactions from others and overt staring are prominent examples of enacted stigma.

  • Parents' characteristics and the child's behavior influenced the intensity of stigma experienced by parents.

  • The child‘s behaviors , lack of knowledge, awareness, acceptance and support from the public are possible factors contributing to stigma

  • Pediatric nurses play a crucial role in developing strategies to help families in alleviating their stress and isolation.

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.

Section snippets

Background

There has been a dramatic rise in the prevalence rate of children diagnosed with autism spectrum disorder (ASD) in the past twenty years. This may be due to increased recognition following changes in the diagnostic criteria, policy, and practice (Elsabbagh et al., 2012). Given the increased prevalence of autism, this condition was chosen as the focus area of this research. For example, the issue of public perceptions of and adverse reactions to individuals with ASD or stigma has long been of

Design

For a comprehensive approach, the guidelines stated in the statement of Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) was utilized for reporting the different phases of identifying studies for inclusion (Moher et al., 2009) (Supplementary File). Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) guidelines were then incorporated when reporting this meta-synthesis (Supplementary File) (Tong, Flemming, McInnes, Oliver, & Craig, 2012).

Characteristics of included studies

Twelve studies met the inclusion criteria. Nine studies were selected through screening of records, and three additional studies were obtained from reference lists. Publication dates ranged between 2002 and 2018. In total, 12 studies were included comprising a total of 256 participants from various socio-demographic backgrounds. Most studies were carried out in the US (n = 3, 25%) and Australia (n = 3, 25%). The remaining six studies (50%) were from Egypt, Ireland, Israel, Kenya, Pakistan and

Discussion

This meta-synthesis explored the parental experiences in raising a child with ASD. Parents faced stigma in different aspects of care, thus different themes were simultaneously generated.

Four prominent themes (felt stigma, enacted stigma, variations in stigma, and contributors to stigmatizing experiences) emerged from the data. The first theme was felt stigma. A large proportion of parents in all the 12 included studies reported experiencing felt stigma, including being blamed and experiencing

Conclusion

The current meta-synthesis identified themes related to parental experiences of stigma when caring for a child with ASD. It offers some insights into the evidence that the community needs to recognize the stigma and challenges that parents of these children endure on a day-to-day basis. The findings from this meta-synthesis seem to indicate parental views on affiliate stigma and the need to create understanding about ASD. It is hoped that this meta-synthesis findings will inform healthcare

Declaration of Competing Interest

The authors declare no actual or potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Acknowledgement

NSS is supported by the Ministry of Higher Education Malaysia and Universiti Sains Malaysia through the Academic Staff Training Scheme (ASTS).

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