Qualitative Evaluation of an Innovative Home Health care Delivery Model for Children with Medical Complexity

ABSTRACT

Background: Family caregivers of children with medical complexity (CMC) report financial problems, job loss due to caregiver responsibilities, fragmented care coordination, and difficulty accessing social services. Home health care services (such as certified nursing assistants or CNAs) provide critical support for these families but are often underfunded and understaffed. Parents also worry about the erratic availability and quality of care offered by external CNAs. These issues led to development of an innovative home care delivery model in Colorado which allows parents or family members of CMC to be paid as their child's CNA. This family certified nursing assistant (fCNA) program has been operating for 20 years, but little is known or published to inform communities and policymakers in other states of the benefits and challenges of this home healthcare model. Methods: We assessed stakeholders' perceptions of the fCNA program by interviewing 25 English- and Spanish-speaking family caregivers (FCs), 10 home health providers (HHPs), and 10 primary care providers (PCPs) of CMC who receive fCNA services. Semi-structured interviews explored perceptions of the program focusing on specific factors such as caregiver self-efficacy, caregiver burden, and implications for QOL. Qualitative content analysis methods were used to generate themes to characterize the fCNA model's benefits and challenges. Results: FCs and HHPs were very knowledgeable about the fCNA program, whereas PCPs had variable knowledge depending on the proportion of CMC in their practice. The three groups aligned around 6 major themes to characterize the program Financial impact, emotional impact, physical impact, self-efficacy, respite, and access. In general, the program was perceived to be very popular among families of CMC. Major strengths included the financial and employment benefits, the ability to have reliable/high quality services (with added protection during Covid-19), and improved FC confidence and self-efficacy (via the training and the work). There were mixed perceptions of the emotional and physical impact. Stakeholders reported added fulfillment, joy, and bonding time in the FC caring directly for the child, but also reduced attention to other family members, decrease FC self-care/respite, and potential for injury as the child ages. Several challenges were identified regarding program access and health equity. These included training requirements, limited English-proficiency, lower health literacy, immigration status, and rural resources. Conclusion: The fCNA program is seen as extremely popular and beneficial for families of CMC. However, improvements could be directed towards equitable access, and increasing respite for FCs already in the program.