Understanding Psychosocial Constraints among Caregivers of Children with Learning Disabilities: A Qualitative Study in Kelantan, Malaysia

Introduction: Caregivers of children with learning disabilities could experience various psychosocial difficulties throughout caregiving process of their children. Psychosocial supports are among the aspects that contribute to family quality of life. This study sought to explore psychosocial constraints experienced by the caregivers of children with learning disabilities in Kelantan, Malaysia. Method: This was a qualitative study utilizing phenomenological approach. This study was conducted in community-based rehabilitation centres and schools with special education integration programme from three regions in Kelantan. Fourteen caregivers and eight service providers were recruited through purposive sampling. Data were collected via face-to-face in-depth interviews with the informants. An interview protocol was used to guide the interviewer along the course of all interviews. The transcripts were analyzed thematically to identify psychosocial issues affecting caregiver’s health-related quality of life and family functioning. Results: The constraints experienced by the caregivers were associated with five main themes such as intrapsychic, attitude, and coping skills of caregiver; accessibility to services; socio-cultural issue; formal and informal social support; and system and policy. These barriers experienced by the caregivers could lead to many unmet needs which further negatively impact their quality of life. Conclusion: In practice, this study highlighted that the psychosocial concerns and determinants of quality of life must be considered in overall intervention planning and strategies. Existing services delivery for children with learning disabilities and their families should be improved.