Determinants of retention in care of newborns diagnosed with sickle cell disease in Liberia: Results from a mixed-methods study of caregivers.
Determinants of retention in care of newborns diagnosed with sickle cell disease in Liberia: Results from a mixed-methods study of caregivers.
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利比里亚诊断出患有镰状细胞病的新生儿保留的决定因素：由治疗者进行混合方法的结果。
DOI：
10.1371/journal.pgph.0001705
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发表时间：
2023
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高收入国家已经确定，早期诊断和预防性治疗可以减少镰状细胞病的早期死亡。然而，在SCD常见的低收入/中等收入国家，临床护理造成的人员流失很常见。保留率低的原因是多因素的，人们对此知之甚少。这项研究的目的是确定影响照顾者围绕SCD儿童的慢性医疗保健需求做出决策的因素。在利比里亚的一项新生儿筛查计划中，我们对被诊断为SCD的儿童的照顾者进行了探索性的序贯混合方法研究。护理者完成了旨在确定健康决策驱动因素的问卷调查和半结构化访谈。访谈被数字化记录、转录、编码，并使用半结构化主题分析来确定主题。数据整合是通过使用定量结果来扩展和澄清定性主题来进行的。26名照顾者参与了这项研究。采访时孩子的平均年龄为43.7个月。确定了影响卫生决策的五个主题：悲伤、支持网络的重要性、耻辱、感知的好处和慢性病的负担。这五个主题跨越了社会生态模型的多个领域，并确定了家庭、社区、社会和文化规范以及组织结构之间的复杂互动。这项研究强调了社区对SCD的认识和医护人员适当的健康沟通的重要性。医疗保健决策是多因素的、复杂的。这些结果为改善护理保留率提供了一个框架。在利比里亚这样的低资源国家，通过利用现有资源和文化习俗可以做很多事情。
High-income nations have established that early diagnosis and preventive treatment reduces early deaths in sickle cell disease (SCD). However, in low-/middle-income countries where SCD is common, attrition from clinical care is common. Reasons for poor retention in care are multi-factorial and poorly understood. The objective of this study was to identify factors that influence caregiver decision-making around chronic health care needs of a child with SCD. We conducted an exploratory sequential mixed methods study of caregivers of children diagnosed with SCD during a newborn screening program in Liberia. Caregivers completed questionnaires and semi-structured interviews designed to identify drivers of health decision-making. Interviews were digitally recorded, transcribed, coded, and analyzed using semi-structured thematic analysis to identify themes. Data integration occurred by using quantitative results to expand and clarify the qualitative themes. Twenty-six caregivers participated in the study. The mean age of the child at the interview was 43.7 months. Five themes influencing health decisions were identified: grief, the importance of support networks, stigma, perceived benefits, and the burden of chronic disease. The five themes crossed multiple domains of a socioecological model and identified complex interactions between family, community, social and cultural norms, and organizational structures. This study highlights the importance of community awareness of SCD and appropriate health communication by healthcare workers. Healthcare decision-making is multifactorial and complex. These results provide a framework for improving retention in care. In a low-resource country such as Liberia, much can be done by leveraging existing resources and cultural practices.