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