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Practical Needs in the Home Care of Latino Children With Medical Complexity
Emily J Ware1, Mark S Beveridge, Aura I Rosado
1Emily J. Ware, MD, MSN, was a Medical Student IV, Wake Forest School of Medicine, Winston-Salem, North Carolina. Mark S. Beveridge, MD, is Medical Director, Children's Health, University of Texas at Southwestern, Dallas, Texas. Aura I. Rosado, MSW, is a Care Coordinator, Pediatric Enhanced Care Program, Department of Pediatrics, Wake Forest School of Medicine, Winston-Salem, North Carolina. Savithri Nageswaran, MD, MPH, is a Professor, Department of Pediatrics, Wake Forest School of Medicine, Winston-Salem, North Carolina.
Insights
Caregivers of Latino children with medical complexity face significant financial and logistical challenges. Addressing these practical needs is crucial for supporting families and improving child health outcomes.
Area of Science:
- Pediatric Healthcare
- Health Disparities
- Caregiver Support
Background:
- Latino children encounter healthcare access barriers, disproportionately affecting those with medical complexity (CMC).
- Adverse social determinants of health, such as food insecurity and housing instability, intensify challenges for Latino CMC.
- Understanding caregiver needs is vital for effective support systems.
Purpose of the Study:
- To describe the practical challenges faced by caregivers of Latino children with medical complexity (CMC) at home.
- To identify key areas where caregivers require assistance in managing their child's complex medical needs.
- To inform interventions aimed at supporting vulnerable families.
Main Methods:
- Qualitative study involving 70 Latino CMC and their families over a median of 45 months.
- Analysis of care coordination notes and interviews with bilingual care coordinators.
- Thematic content analysis to identify recurrent challenges faced by caregivers.
Main Results:
- Caregivers experienced significant financial strain exacerbated by their child's medical condition.
- Difficulties in meeting basic family needs, including food and shelter, were prevalent.
- Challenges in obtaining essential medical supplies for the children were reported.
- Care coordinators were essential for navigating complex healthcare and social systems.
Conclusions:
- Latino caregivers of CMC face substantial hurdles in meeting basic family needs and securing medical supplies.
- Care coordinators play a critical role in mitigating these challenges for Latino CMC.
- Further research is needed to assess the impact of addressing practical needs on health outcomes for Latino CMC.
Abstract:
Latino children face barriers to high-quality healthcare. Because children with medical complexity (CMC) have higher healthcare needs, Latino CMC are likely to experience greater effects of these barriers. These vulnerabilities are exacerbated when Latino CMC endure adverse social conditions, such as food insecurity and housing instability. The study objective was to describe the challenges faced by caregivers of Latino CMC in meeting the practical needs of their children when caring for them at home. In this qualitative study, 70 Latino CMC enrolled in a complex care program of a tertiary care children's hospital were followed for a median duration of 45 months. We collected care coordination notes from encounter logs and interviewed bilingual care coordinators regarding their experiences with each child. Using thematic content analysis and an iterative process, we identified recurrent themes related to practical needs. Four themes emerged. Caregivers: 1) faced financial challenges due to many reasons that were exacerbated by children's medical conditions; 2) had challenges meeting basic needs of their families, including food and shelter; 3) experienced difficulties obtaining necessary medical supplies for their children; and 4) relied on care coordinators to navigate the system. We conclude that Latino caregivers of CMC experience many challenges meeting their families' basic needs and obtaining necessary medical supplies to care for their CMC at home. Care coordinators play a major role in addressing the practical needs of Latino CMC. Future studies should determine whether addressing the practical needs of Latino CMC would improve their health outcomes.
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