Cultural models of child disability: perspectives of parents in Malaysia

Abstract

Background: This study examined parents’ developmental concerns for their children within the context of systems of care in Malaysia.Methods: Focus groups and interviews were conducted in peninsular Malaysia and Borneo.Results: Parents’ perceptions of developmental delay stemmed from three sources: the cultural, resource, and the social environments.Conclusion: There is a need to develop a medical support system in Malaysia that considers a life-course perspective, including prenatal care, screening/diagnosis, and services. This system should embrace a family-centered approach to diagnosis, referral, intervention, and support with sensitivity to cultural beliefs, family preferences, and barriers to care.Implications for RehabilitationParental perceptions of disability affect the strategies they use to cope.This research found that cultural conceptions of disability, available resources, and social support affect parental perceptions of disability.The resource environment in Malaysia significantly restricts parents’ ability to cope with their child's disability.This research recommended that the medical system of Malaysia develops a life-course perspective to disability to provide a range of care for children with disabilities including prenatal care, screening and rehabilitation or coping services.