Abstract
BackgroundQuality of life (QoL) is an important aspect of well-being for the caregivers of children with disability, making it a noteworthy outcome. Little is known about the challenges faced by the caregivers in Asian countries and its association to their QoL. The purpose of this study was to examine a model describing the relationship between sociodemographic and disability-related factors on caregivers’ QoL, mediated by the caregivers’ psychosocial factors such as perceived stress, coping skills, and social support.MethodsA cross-sectional study was conducted involving caregivers of children with special needs in Kelantan, a state of Peninsular Malaysia. A total of 383 caregivers completed questionnaires measuring sociodemographics, disability-related factors, psychosocial factors and QoL outcome. Structural equation modelling was performed to examine the relations of the variables in the conceptual model.ResultsIn the final model, childcare dependency, caregiver’s age, financial support, negative perception of stress and maladaptive coping skills were significant predictors of QoL (R2 = 0.65). Caregiver’s age had a direct effect on QoL, while financial support had an indirect effect on QoL via negative perception of stress. Childcare dependency had direct and indirect effects on QoL via negative perception of stress. Higher perceived stress was associated with lower QoL directly and indirectly via maladaptive coping skills. The final model fitted the data well (root mean square error of approximation [RMSEA] = 0.046; CFI = 0.923; χ2/df = 1.798).ConclusionIntervention strategies to improve the QoL of caregivers should target the family unit and take into account the factors of child’s disability, demographic and caregiver’s psychosocial status.
Highlights
The term children with special needs (CWSN) refers to children with disabilities or ‘special children’
The inclusion criteria were as follows: i) those who were primary caregivers — mother or father or other family members who were responsible for caring of CWSN most of the time; ii) those who had a child with the diagnosis of Down syndrome, autism spectrum disorder (ASD), attention-deficit hyperactive disorder (ADHD), global developmental delays, intellectual disability, or specific learning disabilities; iii) their child aged of 18 years old and below and iv) their child stayed at home
This study highlights the importance of biopsychosocial factors on the healthrelated quality of life (HRQoL) and family functioning of caregivers
Summary
The term children with special needs (CWSN) refers to children with disabilities or ‘special children’. QoL is defined as the individual’s perception of their position in life in the context of their culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns. It is a broad concept incorporating an individual’s physical health, psychological state, level of independence, social relationships, personal beliefs and relationship to salient features of the environment [3]. When compared to developed countries, the integration between health, education and social welfare services systems in Malaysia is still weak in helping to reduce the burden of caregivers as well as to improve the QoL of CWSN and their family [1]. The purpose of this study was to examine a model describing the relationship between sociodemographic and disability-related factors on caregivers’ QoL, mediated by the caregivers’ psychosocial factors such as perceived stress, coping skills, and social support
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