Social and professional support for parents of adolescents with severe intellectual disabilities

Background Previous research has identified various dimensions of social support that are positively associated with parental well-being. However, most research does not include multiple measures of social support and uses heterogeneous samples in terms of child characteristics such as age and severity of intellectual disability. Method Thirty-three parents of adolescent children with moderate-profound intellectual disabilities completed measures of parental well-being (stress, anxiety and depression, and caregiving satisfaction), social support (informal and formal sources, and practical and emotional support), and child characteristics (adaptive and problem behaviours). Results Correlation analyses showed that parental well-being was associated with the child's adaptive and problem behaviours and with the child's autism diagnosis. Parents' ratings of the helpfulness of informal sources of support (spouse, extended family, friends, etc.) was most reliably associated with parental well-being, and remained so after controlling for child characteristics. Parents' access of service and professional support was not associated with parental well-being, but there was some evidence that it was related to their child's needs. Conclusions The research emphasizes the significance of including multiple measures of social support in research with families of children with an intellectual disability. Furthermore, the possibility that parents, during their child's adolescence, may be especially vulnerable to the disruption of their informal support networks is an important practical consideration.