Parents of children with disabilities

Due to recent advances in medical technology, the number of children with special healthcare needs (CSHCN) is steadily growing in the United States. CSHCN comprise more than 40% of overall healthcare costs nationwide, even though this group is only comprised of 16% of the U.S. child population. There are significant differences between private and public health plans in terms of cost, adequacy, and parent satisfaction. As an added benefit, some public and private health insurance plans offer nursing care coordination (or nursing case management) services. The purpose of this study was to understand the experiences of parents of CSHCN enrolled in public and private insurance with or without a nurse care coordinator assigned. A phenomenological approach was used. One-to-one semi-structured interviews were conducted with 16 participants. Colaizzi’s (1978) eight steps of data analysis was the selected methodological interpretation. Five themes emerged from this study: Struggle with Self-Preservation, Abandonment and Isolation, Self-Reliance and Advocate, Interdependence, and Lifeline. These study findings highlighted the major differences with parents navigating their child’s health insurance. These differences were dependent on the type of insurance and sources of support available. The experience of parents with a nurse care coordinator differed from parents without a nurse. Parents of CSHCN enrolled in public insurance with a nurse care coordinator considered the nurse to be a primary source of support. These nurses were instrumental in solving problems with the public health plan. On the contrary, parents with CSHCN enrolled in private insurance without a nurse care coordinator carried this additional burden. There were also noticeable differences in parents’ satisfaction with the adequacy and cost of their child’s health insurance. Parents of CSHCN enrolled in private insurance voiced dissatisfaction with higher costs associated with their child’s plan. Meanwhile, parents of CSHCN enrolled in Medicaid expressed that out-of-pocket expenses were covered. Results from this study can be used to make policy changes by insurance companies. Incorporating nursing care coordination not only results in healthcare savings for the health plan but improved health outcomes for its members as well.

When children have a moderate to severe traumatic brain injury (TBI), they are
treated in a continuum of care that includes triage and emergency care, hospitalization,
rehabilitation and outpatient therapy. Physical and cognitive recovery from brain injury
may take several years. Children’s recovery varies, depending on numerous factors
including pre-injury conditions and injury severity. While children and families are eager
to return home to familiar activities, there are often significant physical, cognitive,
behavioral and emotional changes that challenge families. Successful community
reintegration depends on the ability of the family to understand and support the child,
dealing with and responding effectively to those challenges. The purpose of this study is to understand how parents manage the care and community reintegration of their child who has experienced a TBI over time. This study utilized a mixed methods approach exploring the dimensions of the health challenge faced by parents caring for a child after a TBI, critical turning points as they face health challenges, and approaches for movement toward resolving health challenges. Story theory and story inquiry method were used to gather stories from 10 parents of children who experienced moderate to severe traumatic brain injury between the ages of 12 and 18, and between 2 and 5 years ago. Parents’ perceptions of their child’s quality of life and their ability to manage their child’s health challenge were explored using the Pediatric Quality of Life Inventory and Family Management Measure. Health challenges identified were: living with overwhelming personal upheaval, navigating the unknown, and struggling with how to support independence/dependence. Turning points were chronological or epiphanies. Approaches for movement toward resolving were continuously re-creating a new normal, being fully engaged in meeting the needs of one’s child, and embracing caring relationships to construct the new normal. Qualitative and quantitative data were analyzed to synthesize the findings. Results include a sense of ease in managing the health condition of the child associated with continuously creating a new normal. Healthcare providers can support and strengthen family management of children after TBI by understanding the health challenge, critical turning points and how parents move toward resolving.