The Lived Experience of Parents of Children and Youth With Special Healthcare Needs on Public and Private Insurance

Abstract

Purpose of the Study: The number of children and youth with special health care needs (CYSHCN) is steadily growing in the United States. There are significant differences between private and public health plans in terms of cost, adequacy, and parent satisfaction. The purpose of this study was to understand the experiences of parents with CYSHCN enrolled in public and private insurance with or without a nurse care coordinator. This study also sought to understand parents' experience of support. Primary Practice Setting: The primary practice setting was participants' choice of location. Methodology and Sample: A qualitative descriptive design was used with 16 parents of children and young adults aged 2 to 21 years. Semistructured interviews were used, and Colaizzi's (1978) eight steps was the selected interpretive method. Results: Five themes emerged for parents navigating their child's insurance in the presence or absence of a nurse care coordinator: (1) Struggle with Self-Preservation, (2) Abandonment and Isolation, (3) Self-Reliance and Advocacy, (4) Interdependence, and (5) Lifeline. These themes were also dependent on the type of insurance and sources of support available. Implications for Case Management Practice: Models centered on care coordination can also be used as a mechanism to guide nurse care coordinators in practice. Providing care coordination support could help lessen the caregiver burden especially while navigating public or private insurance. Results highlighted how insurance companies can make potential changes within the health plan infrastructure. Incorporating nursing care coordination activities not only results in health care savings for the health plan but also improved health outcomes for its enrollees.