Project Summary/Abstract
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.
