Children with special health care needs (CSHCN) represent 12.8% of children nationally (9.3 million) and 13.1% of children in Florida. These children need and use more services from health, developmental, educational, and related systems. Disparities in access to care exist for some children (low income, minority, no insurance) and the financial impact (bills, time, lost employment) on families can be great. Families may not be aware of the resources available to them. Families also express frustration with finding and getting information and services. Care coordination is reported to improve access to services, satisfaction with care, and reduce costs. Yet, care coordination is not well described and effects on the family are unknown. Families don't always understand the services available to them, express dissatisfaction, or arrange services themselves. The purpose of this R21 mixed-method exploratory study is to develop and test a family-nurse care coordination intervention for families of CSHCN and their Title V nurse care coordinators. Our study is relevant to the NIH mission to develop effective interventions, improve access and quality of care, and reduce disparities.
Aim 1 will explore family experience, knowledge, and satisfaction with coordination through telephone interviews of a random sample of 500 families. Qualitative interviews with a subsample (n=40) of families will explore strategies families use, barriers they face, and begin to elicit how having care coordination helps families. Nurse focus groups will identify factors that facilitate and challenge their work with families, understand what they do, and what they need.
Aim 2 will use a community-based participatory approach, (parents, providers, nurses, researchers) to develop the intervention emphasizing a family-nurse partnership. We will do this through guided co-learning, search for existing materials, discussion, and will incorporate our preliminary research results from the survey and interviews into intervention development. We anticipate a curriculum related to navigating systems of care that incorporates a Care Notebook (child's health record). We will train peer-parents with the nurses in the identified intervnetion. Our CPBR team will also reflect and evaluate they way they worked together.
Aim 3 will test the feasibility of a peer-parent outreach visit to 200 family participants to teach the curriculum and identify unmet needs. Pre-visit and post- visit briefings will take place between peer-parent and nurse. Families will also be offered an opportunity to review their child's Title V medical record. The qualitative family participant subsample will be re-interviewed to explore perceptions of the intervention and family-sensitive outcome measures. Our study has implications for how systems of coordination can be enhanced. It also has implications for the teaching and support of the families who do not qualify for coordination servcies and do it themselves. Families and nurses have much to teach each other, and other families, about how to achieve the best care for children. ? ? ?
