SALLEH, NOOR SHUHADA (2022) AFFILIATE STIGMA, RESILIENCE AND QUALITY OF LIFE AMONG PARENTS OF CHILDREN WITH AUTISM SPECTRUM DISORDER (ASD) IN TWO PUBLIC HOSPITALS IN KELANTAN, MALAYSIA: A MIXED METHODS STUDY. Doctoral thesis, University Malaya.
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Abstract
Autism spectrum disorder (ASD) includes deficits in verbal and nonverbal communication, repetitive and restrictive interests, as well as impaired social functions. Given the nature of this disorder, parents may deal with unique endeavours as caregivers. One of the challenges is the perception of affiliate stigma in association with the child, which therefore affects the capacity of parents to provide care. Parental resilience and quality of life (QoL) are also brought into question during their child’s upbringing. The aim of this study was to explore affiliate stigma, resilience, and QoL among parents of children with ASD. The Affiliate Stigma Scale (ASS), the Connor-Davidson Resilience Scale (CD-RISC), and the Quality of Life in Autism Questionnaire-Parent version (QoLA-P) were used to survey 144 parents of children with ASD. The findings reported that the mean affiliate stigma score was 25.01, and looking at each item in greater detail, the majority of parents strongly disagreed that ‘Having a child with ASD makes me lose face’ (n = 97, 67.4%). In addition, the mean resilience score was 73.86. ‘When there are no clear solutions to my problems, sometimes faith or God can help’ was the most agreed upon statement indicated by parents when describing their resilience, which was true nearly all the time (n = 105, 72.9%). The mean QoL score was 103.76 and all parents agreed with this statement: ‘I am satisfied with my family life’ when describing QoL (n = 144, 100%). However, parents also described themselves by saying: ‘I feel stressed’ (n = 141, 97.9%), ‘I feel depressed or anxious’ (n = 141, 97.9%), and ‘I feel guilty’ (n = 141, 97.9%). Furthermore, the results showed that the mean differences of affiliate stigma, resilience, and QoL scores were related to parents’ socio-demographic characteristics such as gender, participation in ASD support groups, fathers’ employment status, and mothers’ educational level. For children’s socio-demographic characteristics, having a disability card, receiving a disability allowance, and presence of comorbidities and other conditions associated with ASD such as feeding difficulties were also associated with a difference in the mean scores of affiliate stigma, resilience, and QoL of parents. Correlational analyses revealed that affiliate stigma showed a statistically significant and inverse relationship with resilience and QoL (r = - 0.51, p < 0.001; r = - 0.55, p < 0.001 respectively), indicating higher affiliate stigma correlated with poor resilience and poor QoL among parents. However, the resilience score reported a statistically significant positive relationship with QoL (r = 0.75, p < 0.001), indicating higher resilience correlated with higher QoL among parents. Also, regression analyses revealed that socio-demographic characteristics such as fathers’ employment status, mothers’ educational level, having a disability card, comorbidities of the child, child’s age at diagnosis of ASD, and ASD severity of the child perceived by their parents were associated with affiliate stigma, resilience, and QoL of parents. With regard to the qualitative results, few common themes were derived; the meaning of QoL, diagnostic odyssey, ASD and life adjustment, perceived stigma, getting into the system, self-empowerment, and resilience. In conclusion, living with a child with ASD is a lifelong endeavour for parents. Parents react with a range of intense emotions and face a variety of experiences related to their child, including the issue of affiliate stigma and resilience embedded within these experiences. Consequently, their QoL is further affected during their caregiving. Understanding their experiences is crucial as it provides a glimpse into the reality of daily parenting and the ways ASD affects parent-child dynamics.
| Item Type: | Thesis (Doctoral) |
|---|---|
| Subjects: | Medicine > Medicine (General) Medicine > Pediatrics > RJ101 Child Health. Child health services Medicine > Nursing |
| Depositing User: | ENCIK SAIFUL FADZLY JAMALUDIN |
| Date Deposited: | 25 Sep 2026 12:01 |
| Last Modified: | 25 Sep 2026 12:01 |
| URI: | https://repositori.mohe.gov.my/id/eprint/436 |
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