A Preliminary Study of Activation, Stress, and Self-Management of Parents of Children with Autism Spectrum Disorder

Children with autism spectrum disorder (ASD) and developmental disabilities are high users of services, yet very little is known about how parents of these children interact with the health care system. Further, compared to parents of children with other developmental disabilities, parents of children with ASD experience more stress and dissatisfaction with services. Current efforts for improving services point to a need for understanding caregivers’ perceptions of their own health-care related beliefs and actions. Activation is a construct that measures the belief, knowledge, action, and persistence of managing one’s health care needs. The objective of this preliminary study was to evaluate the activation of parents of children with ASD using an adapted parent activation measure (PAM) for children with developmental disabilities called the PAM-DD. Data were collected from parents who received treatment as usual from a community-based outpatient treatment planning service for children with ASD. PAM-DD scores were compared with parent ratings of stress, self-management, and service satisfaction. Results indicated that increased activation correlated positively with parent report of satisfaction and ability to self-manage child issues such as eating, sleeping, and behavior and correlated negatively with parenting stress. The study of activation shows promise as a feature of quality of care for parents of children with developmental disabilities.