Family-centered communication in pediatric sickle cell disease.
Family-centered communication in pediatric sickle cell disease.
复制标题
小儿镰状细胞病以家庭为中心的沟通。
DOI：
10.1002/pbc.30016
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发表时间：
2022
影响因子：
3.2
通讯作者：
Hildenbrand,AimeeK
中科院分区：
文献类型：
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作者：
Carlson,MeganM;Bear,Benjamin;Alderfer,MelissaA;Schultz,CorinnaL;Monroe,DonnaPennington;Crosby,LoriE;Hildenbrand,AimeeK
镰状细胞病（SCD）患者在获得高质量护理方面存在系统性障碍。研究表明，患者/家庭-提供者关系是医疗保健质量的重要指标，可以影响疾病自我管理和结果。以患者为中心的沟通（PCC）框架认为，以患者/家庭为中心的沟通（例如，在患者独特的心理社会背景下引出、理解和验证患者的观点）有助于改善家庭-提供者关系，以及疾病管理、依从性和健康结果的自我效能。虽然PCC框架在指导其他儿科人群中患者/家庭-提供者沟通的评价方面很有用，但尚未应用于儿科SCD。本研究的目的是使用这个框架，以检查患者和家庭的看法，沟通与儿科SCD healthcare providers.ProcedureTotal 17照顾者（82%的母亲，94%的黑人/非洲裔美国人）和8例患者（62%的女性，年龄13-19岁，M= 16.50）完成了半结构化访谈。PCC框架通知了初步码本的开发。主题内容分析总结了家庭对与供应商沟通的看法。ResultsFor youth with SCD及其照顾者，与以家庭为中心的沟通相关的特定主题包括：减少患者/家属的痛苦，支持疾病自我管理工作，促进信息交流和决策，和促进积极和信任的关系与供应商。结论这项研究有助于解决文献中的差距，有关病人/家庭-儿科SCD内的提供者沟通。结果强调了在儿科SCD护理中以患者和家庭为中心的沟通的重要性。这些发现可以为未来的研究和临床护理计划提供信息，以改善患者/家庭-提供者的互动和这一服务不足人群的健康结果。
BackgroundIndividuals with sickle cell disease (SCD) experience systemic barriers in accessing high‐quality care. Research suggests that patient/family–provider relationships are an important indicator of healthcare quality and can influence disease self‐management and outcomes. The Patient Centered Communication (PCC) framework holds that patient/family‐centered communication (e.g., eliciting, understanding, and validating patients’ perspectives within their unique psychosocial contexts) contributes to improved family–provider relationships, as well as self‐efficacy for disease management, adherence, and health outcomes. While the PCC framework has been useful in guiding the evaluation of patient/family–provider communication in other pediatric populations, it has not yet been applied in the context of pediatric SCD. This study aimed to use this framework to examine patient and family perceptions of communication with pediatric SCD healthcare providers.ProcedureTotal 17 caregivers (82% mothers, 94% Black/African American) and eight patients (62% female, aged 13–19 years,M= 16.50) completed semi‐structured interviews. The PCC framework informed the development of a preliminary codebook. Thematic content analysis summarized family perspectives regarding communication with providers.ResultsFor youth with SCD and their caregivers, specific themes related to family‐centered communication included: reducing patient/family distress, supporting disease self‐management efforts, facilitating information exchange and decision‐making, and fostering positive and trusting relationships with providers.ConclusionsThis study helps to address gaps in the literature related to patient/family–provider communication within pediatric SCD. Results underscore the importance of patient‐ and family‐centered communication across pediatric SCD care. These findings can inform future research and clinical care initiatives to improve patient/family–provider interactions and health outcomes for this underserved population.