Caregivers’ strategies for adult family members with intellectual disabilities and challenging behaviours

Abstract

Most people with intellectual disabilities live with, or with the support of, their families. Adult family member with intellectual disability and challenging behaviors can present considerable demands on the caregiver who lives with them. There is a dearth of literature on the family caregivers’ responses and strategies adopted to manage such behaviors. Part of a larger qualitative interview study that explored the experiences of caregivers living with an adult family member with intellectual disabilities at home, this paper reports on the strategies that family caregivers used to manage challenging behaviors exhibited by their adult family member with intellectual disability.

Methods: A purposive sampling was employed to recruit 60 family caregivers living with an adult with intellectual disability in Hong Kong and northern China. Using the constructivist grounded theory, the interview data collected were analyzed using the constant comparative analysis. Caregivers realized that there were no always-workable solutions and thus they developed a number of strategies to prevent and manage challenging behaviors. Prevention strategies included accommodating the family member with intellectual disabilities and implementing antecedent interventions. Management of challenging behaviors included modifying interactions, verbal communication, reducing the risks of physical harm, and taking stepping-up actions. Once adults with intellectual disabilities reach adulthood, the caregiving tasks of family caregivers may change, but the amount or intensity of input continues to remain constant. Healthcare support and community services to meet the current and future needs of this unique group should be strengthened and provided regularly.