Affiliate Stigma, Resilience and Quality of Life among Parents of Children with Autism Spectrum Disorder in Two Public Hospitals in Kelantan, Malaysia.

Background: Often, the indirect impact of autism spectrum disorder (ASD) presents the family with significant challenges. One of these challenges is affiliate stigma due to parental affiliation with their child. This study aimed to explore affiliate stigma, resilience and quality of life (QoL) among parents of children with ASD. Methods: Cross-sectional study of 144 parents of children with ASD were recruited from two main tertiary hospitals in Kelantan, Malaysia, a developing country in Southeast Asia. Pearson correlation was used to examine the relationship between parental affiliate stigma, resilience and QoL. Simple and multiple linear regression analyses were used to identify the significant associated factors of affiliate stigma, resilience and QoL. Results: Correlational analyses revealed that perceived affiliate stigma demonstrated an inverse relationship with resilience and QoL. Additionally, resilience had a positive relationship with QoL. Regression analyses revealed that the father's employment status, the mother's level of education, having a disability card, the child's age at ASD diagnosis, comorbidities of the child and ASD severity perceived by parents were associated with parental affiliate stigma, resilience and QoL. Conclusion: Study findings highlight the contribution of socio-demographic characteristics of children with ASD and their families in the determination of affiliate stigma, resilience and QoL.

An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD).

Purpose: Children diagnosed with ASD usually have impaired social functions, exhibit repetitive, stereotyped and self-stimulatory behaviors, which make them prone to be stigmatized by the public. However, stigma not only affects those with stigmatization characteristics such as children with ASD but also tends to include other people related to them including parents. This is called affiliate stigma. However, affiliate stigma is unlikely to occur if public awareness is high. Considering that awareness of ASD is still comparatively low in this region and that, as a review of the literature showed, there have been limited studies on stigma and ASD conducted in South-East Asia, particularly in Malaysia, this study is of great significance, especially in the context of the East and other developing countries. The aim of this study was to explore parents' experiences of caring and perceptions of affiliate stigma, resilience and quality of life (QoL) when caring for a child with ASD. Methods: This paper is part of the sequential explanatory mixed-methods study in which, after a cross-sectional study of 144 parents, a qualitative approach was used to explore parents' experiences of caring and their perceptions of affiliate stigma, resilience, and QoL. Participants were recruited when they were accompanying their children to therapy at two tertiary public hospitals in one of the north-eastern states of Malaysia. Eleven parents of children with ASD aged 2-12 years participated. Qualitative data analysis followed Braun and Clarke's methodology of thematic analysis. Results: Four themes were identified: the meaning of QoL, ASD and life adjustment, perceived stigma, and resilience. Conclusion: This is the first Southeast Asian study on parent-perceived affiliate stigma, resilience, and QoL in the context of ASD. These findings can inform healthcare personnel and policymakers into day-to-day parenting realities and therefore an effort to coordinate support services across all disciplines could be made to improve outcomes for both parents and children.

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

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.