Children with medical complexity (CMC) are the most resource intensive pediatric patients and have high unmet home health care needs. Their family caregivers incur significant stress related to chronic caregiving, with associated adverse impacts on quality of life, financial and employment status, and physical and emotional health. Innovative health care delivery paradigms are sorely needed to improve quality of life and health outcomes for patients and their families. One such program already exists: Colorado?s Parents as their Child?s Certified Nursing Aide (pCNA) program. This model allows eligible parents to be compensated by Medicaid as their medically complex child?s CNA offsetting financial pressures associated with employment disruption when these parents have to stay home to take care of their children. While the program seems advantageous in many ways, it has never been studied, despite allocation of considerable resources to its administration. This mixed methods proposal will address the current evidence gap by assessing stakeholders? perspectives of the benefits and drawbacks of the pCNA program, and by quantifying its impact on health care utilization and costs in CMC.
In Aim 1 we will interview family caregivers, primary care providers, and home health agency administrators of CMC who receive pCNA services. Semi-structured interviews will explore perceptions of the program?s impact on patients? and caregivers? quality of life with specific focus on potential benefits such as improved caregiver self-efficacy, and potential pitfalls such as increased caregiver burden. We will use qualitative content analysis methods to generate themes to characterize pCNA model benefits, drawbacks, and impacts on caregivers? and patients? quality of life.
In Aim 2, we will perform a retrospective cohort analysis to assess the hypothesis that healthcare utilization and costs are lower for hospitalized CMC with parents or relatives as their CNA (pCNA) compared with those who have non-relatives as their CNA (rCNA). We will use hospital administrative data linked to Medicaid claims data in order to obtain robust analyses of the outcomes of interest. The primary outcome is hospital readmission within 60 days, and secondary outcomes are emergency department use and cumulative healthcare costs within 60 days of discharge. We hypothesize that pCNA recipients will have lower readmission rates, fewer emergency department visits, and lower cumulative healthcare costs within 60 days of discharge compared with rCNA recipients. This proposal addresses the lack of evidence for the pCNA model, a family-centered self-management program for CMC, and will identify strengths and weaknesses of the program. The findings will be used to design improvements to the pCNA model for future testing in a pragmatic effectiveness trial, and to disseminate this promising pediatric home health care paradigm for CMC. This research proposal aligns with the NINR?s mission to support research on patient-focused self-management programs for chronic conditions, provide caregivers with better tools to fulfill their caregiving responsibilities, and to improve quality of life for individuals with chronic illness.
This proposal aims to increase knowledge of Colorado's Parent as their Child's Certified Nursing Aide Program, a unique home health care model for children with medical complexity. The proposal is a focused research agenda designed to addresses the evidence gap in understanding of a family centered self-management program that can be enhanced and disseminated to improve health outcomes and quality of life for patients, families, and communities. This application is submitted in response to the NINR funding opportunity (PA-18- 380) on Family-Centered Self-Management of Chronic Conditions (R21).
