Caring Connections: A Grounded Theory Study of the Grief and Bereavement Experiences of Children With Intellectual Disabilities.

Abstract

Children with intellectual disabilities (ID) have been minimally represented in grief research. This grounded theory study aimed to elucidate the grief and bereavement experiences of children with ID from the perspective of their caregivers, and optionally from their child, and to develop a substantive theory to guide developmentally inclusive interventions. Eligible participants were caregivers of a child with ID who was 5-17 years old when they experienced the death of someone significant within the past six months to three years. After purposive sampling through disability organizations, adult caregivers (n = 19) and children (n = 6) participated in semi-structured interviews. Constant comparative analysis led to the Caring Connections theory, which delineates processes related to internal loss experiences and the outward desire to care for others. With clinical implications, this theory highlights that supporting grieving children with ID includes fostering opportunities for caring and connection, which can enhance coping and may mitigate disenfranchised grief.