Family Stress and Early Intervention for Families of Infants and Toddlers with Complex Medical Needs

Abstract

Advances in medical technology have enabled children to survive with conditions that were once considered fatal; however, with their increased life expectancy these children may also experience chronic illnesses or severe disabilities. Part C early intervention is a home-based program that provides support for families of children aged 0-3 years with disabilities, with the purpose of assisting families in minimizing adverse effects of the child's condition, and maximizing the child's development. This mixed methods study was guided by the question: What do parents of children ages 0-3 with complex medical needs say about the relationship between early intervention services and parental levels of stress? Five follow-up questions addressed the change in the participants' stress levels after 6 months of early intervention service, satisfaction with early intervention services, and additional supports available to the family. Participants included eight biological parents and one grandparent who were caring for a child with complex medical needs who were newly enrolled in early intervention services. Participants were given the Parenting Stress Index/Short Form (PSI/SF) at intake and again 6 months later. Paired samples t-tests were conducted for Total Stress and each of the subscales (PD, P-CDI, and DC). Semi-structured interviews, guided by the Family Support Scale (FSS) were conducted to determine additional supports. Results indicated a decrease in Total Stress scores and on two of the three subscales. Parents indicated an improvement in the child's condition, access to information, and increased support and communication helped to reduce their overall stress levels. Findings indicate the need for further research including: the relationship between family stress and early intervention services, boundary ambiguity, and connection.