Quality of Life Among Caregivers of Children with Special Needs in Kelantan, Malaysia: The Importance of Psychosocial Mediators

BACKGROUND: Quality 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.

METHODS: A 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.

RESULTS: In the final model, childcare dependency, caregiver's age, financial support, negative perception of stress and maladaptive coping skills were significant predictors of QoL (R 2 = 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).

CONCLUSION: Intervention 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.