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Fulltext "Sometimes I Feel Grateful…": Experiences of the Adolescent Siblings of Children with Autism Spectrum Disorder in Malaysia

Chu SY, Kassim SNZB, Gan CH, Fierro V, Chan CMH, Hersh D

J Autism Dev Disord, 2023 Feb;53(2):795-807.
PMID: 34247302 DOI: 10.1007/s10803-021-05184-5

Sibling relationships remain understudied in typically developing adolescents who have siblings with autism spectrum disorder (ASD). This study explored the lived experiences and perceptions of adolescents who have a brother or a sister with a diagnosis of ASD using semi-structured interviews. Using thematic analysis, the participants reported having difficulties communicating with their siblings. Feeling a mixture of emotions was common when interacting with their siblings with ASD and emotional self-regulation was a typical coping strategy utilized by these adolescents. Despite the challenges, having a sibling with ASD led to closer relationships between the siblings. These findings offer insights into these adolescents' needs and how they may be best supported, informing the practice of speech-language pathology and other health professions.
Fulltext Knowledge mediates attitude in autism spectrum disorders? Data from Malaysia

Chu SY, Lee J, Wong YY, Gan CH, Fierro V, Hersh D

Int J Dev Disabil, 2023;69(4):568-577.
PMID: 37346250 DOI: 10.1080/20473869.2021.1975254

Limited efforts have been made in middle- and low-income countries to raise public awareness of autism spectrum disorders (ASD) over the past ten years. We report data from a general population survey exploring the relationship between awareness, knowledge, and attitudes regarding autism in Malaysia. A questionnaire consisting of items related to awareness, knowledge, and attitudes regarding ASD was distributed. The scores of knowledge of ASD and attitude towards ASD were 6.87 (SD = 4.17; with a total possible score of 12) and 6.39 (SD = 2.77; with a total possible score of 9), respectively, indicating that, on average, the participants had moderate levels of knowledge and attitude. Structural equation modeling showed that improving awareness and knowledge about ASD will enhance more positive attitudes towards ASD. Efforts should be geared towards disseminating information about ASD, in order to increase acceptance of the disorder.
The relationship between affiliate stigma, stress, and quality of life for parents of individuals with cerebral palsy in Malaysia

Chu SY, Rafi ABM, Lee J, Fierro V, Gan CH, Joginder Singh S, et al.

Disabil Rehabil, 2023 Dec;45(24):4035-4047.
PMID: 36541160 DOI: 10.1080/09638288.2022.2153304

OBJECTIVE: To examine the relationship between affiliate stigma, stress, and perceived quality of life among parents of children with cerebral palsy (CP).
METHOD: Surveys (Study 1) and semi-structured interviews (Study 2) were used to collect data. Thirty-eight respondents completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI), and Care-related Quality of Life (CarerQol) scales (GMFCS). Eleven respondents took part in semi-structured interviews, which were then thematically evaluated.
RESULTS: Parents did not feel stigmatized because they had a child with CP. However, parents needed some form of short-term relief from caregiving. After controlling for demographics, high stress respondents experienced high affiliate stigma whereas low stress respondents had better quality of life. Although the respondents with less stigma had a better quality of life, this effect was moderate. Three major themes emerged from the interviews.
CONCLUSION: Counseling, support groups, and helper services should be offered to parents. Also, healthcare professionals participating in CP rehabilitation, community-based rehabilitation, and health institutions should be educated on how to better help parents of children with CP.

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