Self-stigma and its associations with stress and quality of life among Malaysian parents of children with autism.

BACKGROUND: This study explored the relationship between self-perceived stigmatization (affiliate stigma), stress and quality of life among parents of children with autism spectrum disorder (ASD). METHOD: Participants (N = 110) filled-in the Affiliate Stigma Scale, the Caregiver Burden Inventory and the CarerQOL scale. RESULTS: Parents reported low scores on stigma and fair levels of stress and quality of life, indicating that parents do not feel stigmatized by affiliation with a child with ASD nor are they stressed from affiliate stigma. After controlling for demographic factors, both the relationships of affiliate stigma with stress and with quality of life were weak, indicating that stigma may have little to no effect on stress and quality of life. CONCLUSION: Cultural and religious beliefs may play a part in the acceptance of a child's condition, resulting in less impact of stigma on the parents.

Instruments for evaluating the parental emotional status and ecological support systems among parents who considered cochlear implantation for their children with hearing loss: A scoping review.

OBJECTIVES: Parents of children diagnosed with severe-to-profound sensorineural hearing loss may experience a range of emotions owing to a lack of knowledge and experience in dealing with such children. However, most audiology clinics only attend to children with deaf and hard of hearing (DHH) and not their parents. Thus, parents' emotional and support needs are frequently excluded from the intervention sessions, making their own needs invisible. This study aimed to identify academic and clinical instruments used for assessing parental emotional status (PES) and ecological support systems (ESS) in early intervention and determine the factors affecting PES and ESS among parents of DHH children undergoing cochlear implantation. MATERIALS AND METHODS: This scoping review followed the rigorous methodological framework; searched Medline (via OVID and EMBSCO), Scopus, and Web of Science; and selected studies relevant to validated instruments used to evaluate the PES and ESS among parents of DHH children below 6 years old. Before selecting and reviewing relevant articles, two reviewers independently assessed article titles and abstracts from the data sources. Two reviewers verified half of the first reviewer's extracted data. RESULTS: Overall, 3060 articles were retrieved from the database search, and 139 were selected for full-text review following title and abstract reviews. Ultimately, this study included 22 articles. Among them, 23 and 12 validated instruments, most of which are generic measures, were used for assessing PES and ESS, respectively. Three condition-specific instruments were identified and designed to be administered following cochlear implantation surgery. CONCLUSIONS: This study revealed that healthcare professionals who interact with parents of DHH children lack the necessary instruments, particularly for parents of children undergoing cochlear implantation surgery. Therefore, it is necessary to develop condition-specific instruments for parents who consider cochlear implantation for their children.

Validation of the Malay version of the Patient Health Questionnaire-4 (PHQ-4) among Malaysian undergraduates.

The study's objective is to validate the Malay version of the Patient Health Questionnaire-4 (PHQ-4) among Malaysian undergraduates. A cross-sectional survey was distributed at three universities in Malaysia (N = 500; mean age = 21.66 ± 1.57). The internal consistency of the Malay PHQ-4 was acceptable (α = .78, 95 % CI [.74, .81]), while the test-retest reliability was good (ICC = .77, 95 % CI [.34, .91], p < .001). The one-factor structure showed the best fit in confirmatory factor analysis and was similar across sexes. The Malay PHQ-4 has acceptable psychometric properties and can be used for pre-clinical screening purposes among Malaysian undergraduate students.

Knowledge mediates attitude in autism spectrum disorders? Data from Malaysia.

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.

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

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.

The relationship between affiliate stigma, stress, and quality of life for parents of individuals with cerebral palsy in Malaysia.

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.

There is a need in Malaysia to offer counseling, support groups, and assistance programs for parents of children with cerebral palsy.Healthcare professionals, who offer rehabilitation services to children with cerebral palsy, need greater awareness of the needs of families and caregivers and should be educated about how to best support them.There should be greater recognition of the importance of respite and relief from caregiving among Malaysian parents of children with cerebral palsy.