Stress and Resilience Among Families Caring for Children with Intellectual Disability: Expanding the Research Agenda

Abstract

Parents of children with intellectual disability (ID) tend to report higher-than-average rates of stress, anxiety and depression. Chronic psychological distress may place parents at increased risk of marital disruption, family dysfunction, and for a number of physical and mental health conditions. The prevailing approach in the literature starts from the premise that (the care needs of) the child with ID is the stressor and, in doing so, equates resilience with the successful adaptation of families to caring for a child with ID. This approach naturally leads to proposals for special services aimed at modifying or reforming the individual child, caregiver and/or family. In this paper, we highlight some of the limitations of a research programme that frames the problem as family adaptation to caring for a child with ID. We argue for expanding the research agenda to consider the adaptation of families caring for children with ID through greater understanding of the social-ecological constraints on families and the resources needed to meet the ‘normal’, everyday adaptive challenges they face.