Emily 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.
Home Healthc Now. 2020 Jul/Aug;38(4):202-208. doi: 10.1097/NHH.0000000000000854.
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.
拉丁裔儿童在获得高质量医疗保健方面面临障碍。由于患有复杂疾病的儿童(CMC)有更高的医疗需求,拉丁裔 CMC 可能会受到这些障碍更大的影响。当拉丁裔 CMC 面临诸如食品安全和住房不稳定等不利社会条件时,这些脆弱性会加剧。本研究的目的是描述照顾拉丁裔 CMC 的照顾者在满足他们在家照顾孩子的实际需求时所面临的挑战。在这项定性研究中,70 名拉丁裔 CMC 参加了一家三级儿童医院的复杂护理计划,中位数随访时间为 45 个月。我们从会诊日志中收集了护理协调员的笔记,并采访了双语护理协调员,了解他们与每个孩子的经历。我们使用主题内容分析和迭代过程,确定了与实际需求相关的反复出现的主题。出现了四个主题。照顾者:1)由于许多原因导致经济困难,而这些原因又因孩子的病情而加剧;2)在满足家庭的基本需求方面存在困难,包括食物和住所;3)在为孩子获得必要的医疗用品方面遇到困难;4)依赖护理协调员来管理系统。我们得出结论,拉丁裔 CMC 的照顾者在满足其家庭的基本需求和获得必要的医疗用品以在家中照顾 CMC 方面面临许多挑战。护理协调员在解决拉丁裔 CMC 的实际需求方面发挥着重要作用。未来的研究应该确定解决拉丁裔 CMC 的实际需求是否会改善他们的健康结果。