Bidirectional processes linking social determinants of health and pediatric sickle cell anemia management: A qualitative study.
Bidirectional processes linking social determinants of health and pediatric sickle cell anemia management: A qualitative study.
复制标题
将健康的社会决定因素与儿童镰状细胞贫血管理联系起来的双向过程：一项定性研究。
DOI：
10.1002/pbc.30539
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发表时间：
2023
影响因子：
3.2
通讯作者：
Kavanagh,PatriciaL
中科院分区：
文献类型：
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作者：
Long,KristinA;Blakey,ArielO;Amaro,ChristinaM;Eilenberg,JennaS;Brochier,Annelise;Garg,Arvin;Drainoni,Mari-Lynn;Pashankar,Farzana;Esrick,EricaB;Kavanagh,PatriciaL
背景镰状细胞性贫血（SCA）患儿比其他疾病患儿有大量的医疗需求和更多未满足的基本需求。尽管最近关注健康的社会决定因素（SDoH），但对SDoH与疾病管理，特别是患有SCA的青年的疾病管理之间的联系过程仍有不完全的了解。本研究阐明了这些过程，并确定了减轻不良SDoH对SCA管理的有害影响的方法。方法SCA（≤12岁）患儿的父母/主要照顾者（N= 27）参加了关于SCA管理和SDoH的半结构化访谈，并完成了基本需求的定量测量。定性数据采用应用专题分析进行系统编码和分析。定量数据以描述性方式呈现。结果确定了三个定性主题。首先，SCA管理与社会环境是双向联系的，SCA管理的挑战会阻碍基本需求的满足，而未满足的基本需求和经济困难又会阻碍SCA管理。其次，由于资源有限，家长/看护人在优先考虑基本需求和SCA管理之间面临着艰难的选择。第三，处理物质、情感和信息需求可以改进SCA管理。从数量上看，73%的家庭认可≥1种基本需求，包括粮食不安全（42%）、住房不稳定（62%）和/或能源不安全（19%）。结论：尽管有相关文献记载，但人们对SDoH与健康之间的关系仍知之甚少。研究结果强调了日常条件如何破坏SCA治疗、症状和并发症的管理，限制了治疗效果。了解这些过程可以为以家庭为中心的健康公平干预和政策提供信息，以改善生活条件、疾病管理和健康结果。
BackgroundChildren with sickle cell anemia (SCA) have substantial medical needs and more unmet basic needs than children with other medical conditions. Despite a recent focus on social determinants of health (SDoH), there remains an incomplete understanding of the processes linking SDoH and disease management, particularly for youth with SCA. This study elucidated these processes and identified ways to mitigate deleterious effects of adverse SDoH on SCA management.MethodsParents/primary caregivers (N= 27) of children with SCA (≤12 years old) participated in semi‐structured interviews regarding SCA management and SDoH and completed quantitative measures of basic needs. Qualitative data were systematically coded and analyzed using applied thematic analysis. Quantitative data were presented descriptively.ResultsThree qualitative themes were identified. First, SCA management is bidirectionally linked with the social environment, whereby challenges of SCA management can hinder basic needs from being met, and unmet basic needs and financial hardship hinder SCA management. Second, due to limited resources, parents/caregivers are faced with difficult choices between prioritizing basic needs versus SCA management. Third, addressing material, emotional, and informational needs may improve SCA management. Quantitatively, 73% of families endorsed ≥1 basic need, including food insecurity (42%), housing instability (62%), and/or energy insecurity 19% (vs. 20%).ConclusionDespite documentedassociations, there remains a poor understanding of theprocesseslinking SDoH and health. Findings underscore how day‐to‐day conditions undermine the management of SCA treatments, symptoms, and complications, limiting treatment effectiveness. Understanding these processes may inform family‐centered, health equity interventions and policies to improve living conditions, disease management, and health outcomes.