This article presents the findings of a self-report study of the consequences of being an informal caregiver in Malaysia. The aim of this exploratory study was to examine Malaysian efforts in assisting informal caregivers, based on an analysis of the issues and concerns raised by the caregivers themselves. Data were obtained from a cross-sectional survey of informal caregivers in 2009. This sample comprised parents, spouses and/or adult siblings, and adult children, caring for their children, spouses or siblings and parents who were chronically ill and/or had a disability. Of 300 prospective participants, only 175 could be located (58%), but all those contacted agreed to participate. Respondents were randomly selected and interviewed using a structured questionnaire to identify the emotional, financial, social and physical issues consequent upon being a caregiver. Most respondents reported that their care-giving responsibilities had impacted their emotional, financial, social and/or physical well-being. Inadequate and/or uncertain income was by far the greatest concern followed in descending order by social, physical and emotional consequences. The one-way analysis of variance showed significant differences among the three categories of caregivers with respect to physical and emotional consequences. The findings show that care-giving has detrimental effects on the lives of informal caregivers, and that they are in significant need of social support to help them deal with care-giving tasks and responsibilities. Based on the findings, an integrated social support programme is proposed, tailored to the needs of informal caregivers.

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ABSTRAK Sokongan sosial intergenerasi antara anak dewasa dan ibu bapa tua merupakan fenomena yang menjadi

Autism Spectrum Disorder (ASD) has become more prevalent globally. The disorder is predominantly characterised by low social skills noted explicitly in people with High Functioning Autism Spectrum Disorder (HFASD). The individuals usually possess a normal or superior intelligence quotient (IQ) but the disability impedes the achievement of their actual high potential, hence compromising their quality of life (QoL). Managing adversities encountered by children with HFASD often compromises the QoL of the entire family. Thus, this study aimed to identify specific domains of QoL among mothers of high-functioning autistic adolescents. The study assessed seven mothers of adolescents with HFASD using a semi-structured interview format. A thematic qualitative analysis was conducted to analyse the data. The results suggested that mothers perceived their QoL based on physical and emotional well-being, material well-being, interpersonal relationship, and environmental well-being. Intervention for HFASD is multidisciplinary, which targets a broad spectrum of symptoms and skills deficits and customises the programme to meet each individual’s different needs. Nonetheless, intervention facilities in Malaysia are seriously limited, particularly in supporting QoL for children with HFASD. Therefore, by identifying the domains of QoL would improve the mothers’ resilience in raising their children with HFASD.

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