Developing an Information Pack for the Asian Carers of People With Autism Spectrum Disorders

Dobson, Susan; Upadhyaya, Shripati; McNeil, Jeanie; Venkateswaran, Shoba; Gilderdale, Debra

doi:10.3109/13682820109177887

Cited by 10 publications

(3 citation statements)

References 2 publications

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“…They have also been found to shape individuals’ attitudes and behaviors about the cause and course of various psychological disorders including ASD, the age of diagnosis, the emphasis placed on various symptoms, and intervention goals (Kuo, Kwantes, Towson, & Nanson, 2006; Mandell & Novak, 2005; Seligman & Darling, 2007). As a case in point, in many South Asian languages, there is no word for autism, and autism is regarded by some as a “Western” disease (Dobson, Upadhyaya, McNeil, Venkateswaran, & Gilderdale, 2001). These considerations have prompted several researchers to advocate for autism research among culturally diverse groups (Dyches et al, 2004; Mandell & Novak, 2005).…”

Section: Cultural Contextmentioning

confidence: 99%

Transition to Kindergarten for Children With Autism Spectrum Disorder

Starr

Martini

Kuo

2014

Focus Autism Other Dev Disabl

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Despite the stated importance of a successful kindergarten transition (TTK) for future school success, no research has addressed this transition for culturally/ethnically diverse families having children with autism spectrum disorders (ASD). To address this gap, six focus groups (three with ethnically diverse parents, one with kindergarten teachers, and one each with early childhood resource teachers and early intervention providers) were conducted to elicit the experiences of these stakeholders regarding TTK for children with ASD generally, and the TTK experience for ethnically diverse families specifically. Four major themes relating to TTK emerged from the focus groups: Relationship Building, Communication, Knowledge, and Support. While these themes were relevant for all groups, parents who were relatively recent immigrants and for whom English was not a first language identified unique difficulties. Results are discussed within the context of Bronfenbrenner’s Ecological Systems Theory. Recommendations to improve the experience for ethnically diverse families are explored.

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Section: Cultural Contextmentioning

confidence: 99%

Transition to Kindergarten for Children With Autism Spectrum Disorder

Starr

Martini

Kuo

2014

Focus Autism Other Dev Disabl

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“…We have not identified studies of supportive interventions tested among SSc caregivers, however, there are websites that provide information for informal SSc caregivers [12,13]. Many different kinds of support services have been developed and tested among caregivers to persons with more common diseases [14][15][16], including newsletter resources, information packages, support groups, and psychotherapy tailored for caregivers. In a survey of 188 caregivers to elderly individuals, similar to our findings, caregivers reported being more interested in a newsletter developed for caregivers than interventions that require face-to-face or simultaneous virtual contact, such as support groups or help from a volunteer [17].…”

Section: Discussionmentioning

confidence: 99%

Challenges and support service preferences of informal caregivers of people with systemic sclerosis: a cross-sectional survey

Rice

Cañedo-Ayala

Carboni-Jiménez

et al. 2019

Disability and Rehabilitation

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Purpose: To evaluate the importance of different challenges experienced by informal caregivers to persons with systemic sclerosis (SSc) and identify priorities for support services that could be developed. Materials and Methods: Caregivers of people with SSc from three continents completed an online questionnaire to rate the importance of possible caregiver challenges and likelihood of using different forms of support services. Importance of challenges and likelihood of using support services were rated from 1 (not important; not likely to use) to 4 (very important; very likely to use). Results: Two hundred and two informal caregivers completed the survey (79 women, 123 men). Mean age was 58 years (standard deviation ¼ 13). The most important challenges were related to supporting the care recipient with emotional difficulties and physical discomfort. Caregivers indicated that they would be more likely to use support services that involved online or hard-copy information resources, including those provided soon after diagnosis, compared to support that involved interacting with others. Conclusions: Supporting the care recipient in managing emotional difficulties and physical discomfort were important challenges among caregivers. Interventions delivered through hardcopy or online resources, including those delivered soon after the care recipient's diagnosis, were rated as being most likely to be used by caregivers. ä IMPLICATIONS FOR REHABILITATIONMany caregivers for individuals with systemic sclerosis report struggling to support their care recipient with emotional difficulties and physical discomfort. Rehabilitation professionals can aid in the development of support services that caregivers have identified as being likely to use and can refer caregivers to resources that they have identified as being helpful, such as educational information about the disease. The development of support services should focus on aspects of caring that caregivers found most challenging and be delivered in a format that considers caregiver preferences.

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“…Recently, the estimate increased from approximately 1% in large studies of ascertaining possible ASD cases in the US and the UK to 2.6% in one South Korean study that actively screened for ASD in a general population [6]. ASD prevalence varied worldwide from 1.4/10,000 children in the Arabian Peninsula to 185/10,000 children of Asian population [7]. In Europe, the highest prevalence has been observed in Sweden (115/10,000), while the lowest is in Croatia (2-3/10,000) [8].…”

Section: Introductionmentioning

confidence: 99%

Prevalence and Risk Factors of Autism Spectrum Disorders in Children Aged 18-36 Months in Hubei Province, China

Dai¹,

Kong²,

Song³

et al. 2019

JFMHC

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We recruited 15,417 participants aged 18 to 36 months in central China using a stratified, multi-stage random sampling method. For children with a positive result in Toddlers screening test, further diagnostic assessment of autism spectrum disorders (ASD) was performed using the childhood autism rating scale and the Diagnostic and Statistical Manual of Mental Disorders. ASD prevalence among these children was 0.58% in Hubei province. Multivariate-adjusted logistic regression models were then used to explore potential ASD risk factors. One parent aged 35 or older, preterm birth, and birth weight < 2.0 kg remained significantly associated with elevated ASD risk (P < 0.05). These findings indicated that management of adverse perinatal factors may prevent the occurrence of ASD.

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Developing an Information Pack for the Asian Carers of People With Autism Spectrum Disorders

Cited by 10 publications

References 2 publications

Transition to Kindergarten for Children With Autism Spectrum Disorder

Transition to Kindergarten for Children With Autism Spectrum Disorder

Challenges and support service preferences of informal caregivers of people with systemic sclerosis: a cross-sectional survey

Prevalence and Risk Factors of Autism Spectrum Disorders in Children Aged 18-36 Months in Hubei Province, China

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