Current estimates indicate that about 9.4 million children have special healthcare needs and 20 percent of U.S. households have a child with special health care needs. Children with special health care needs (CSHCN) are a high-risk, high-cost group susceptible to poor health outcomes because of inadequate access to or inadequate coordination of needed services. Families are central to assuring access to and coordination of services for CSHCN. Although we increasingly recognize and study the effect the interplay of biological, behavioral and social environments has on long-term outcomes of families and children, gaps exist in our understanding of families' experiences during critical transitions in community-level service systems. Families of CSHCN experience multiple transitions in community service systems. This research focuses on the transition from early intervention services (EI) to preschool special services (PS). We know from preliminary research that this transition is difficult for families but not what could be done to ease the burden. The purpose of this pilot study is to provide descriptive evidence of families' experiences transitioning from EI to PS.
The specific aims of this study are to: 1. Examine changes in family stress before and after transition to PS. 2. Identify the magnitude and direction of change in the variables: pile-up of demands, type of family functioning, and social support. 3. Determine which specific aspects of care giving for CSHCN change as a result of transition to PS and how stressful that change is. 4. Identify challenges families faced during transition to PS, strategies they use to meet them, and changes they believe would make the transition easier. Because transition to PS is complex this study uses a mixed methods design (Sequential Explanatory) to obtain a more complete description of the family's experience. Analysis of quantitative data (Aims 1-3) will provide new knowledge of important variables affecting families transitioning, and will help to target the families to be included in a qualitative study (Aim 4). Analysis of qualitative data will help us understand the specific care giving challenges families face as well as well as the strategies they have already tried to deal with the transition, and will provide suggestions for changes that could be incorporated in a health promotion and prevention intervention for families transitioning from EI to PS. 7. Project Narrative Current estimates indicate that about 9.4 million children have special healthcare needs and 20 percent of U.S. households have a child with a special health care need. Children with special health care needs are a high-risk, high-cost group susceptible to poor health outcomes because of inadequate access to or inadequate coordination of needed services. Consistent with the goal of Healthy People 2010, Objective 6, this research project will identify factors affecting families attempting to access services for their children and changes that could be made to help them in this process. ? ? ? ?
| Caley, Linda M (2012) Risk and protective factors associated with stress in mothers whose children are enrolled in early intervention services. J Pediatr Health Care 26:346-55 |
