Children with Complex Special Health Care Needs and the Health Services System: Unmet Needs, Barriers to Care, and Coordination of Health Services.

Abstract

The broad objective of this dissertation research was to examine the health care system experiences of a vulnerable population: children with complex special health care needs. This dissertation consists of three related studies designed to address gaps in the current literature, with the goal of informing policy discussions surrounding children with complex needs. The first study developed a measure to identify and describe children with complex special health care needs and applied this measure to the 2005 National Survey of Children with Special Health Care Needs. Compared to children with low to moderately complex special health care needs, high complexity children present a unique diagnostic profile and a high level of unmet needs. Additionally, families with high complexity children frequently report logistical and provider level barriers to care not commonly reported among the broader special needs population. The second study, utilizing the measure of complexity developed in the first study, presents a profile of care coordination services for children with complex health care needs and presents support for the hypothesis that receiving adequate care coordination is associated with reductions in unmet needs for services. However, only 35.6% of high complexity children receive effective care coordination. For the third study, 122 parents whose children attended a pediatric home ventilator clinic (84% of the patient population) completed a survey in order to assess the themes of unmet need and care coordination among children dependent on ventilators. More than half of families reported unmet needs for care, most frequently therapeutic services and home health care. There was a low level of unmet need for preventive and specialty care. Overall, this research demonstrates that children with complex special health care needs should be the focus of independent studies and policy discussions. Future research that does not separate the heterogeneous population of children with special health care needs by complexity will fail to identify the unique barriers to care faced by this group, leading to policies that do not benefit high complexity children and their families.