University of Kansas School of Medicine, Kansas City, Kansas, USA.
American Academy of Family Physicians National Research Network, Leawood, Kansas, USA.
Health Expect. 2023 Aug;26(4):1596-1605. doi: 10.1111/hex.13764. Epub 2023 Apr 20.
Refugees and migrants face suboptimal involvement in spaces for primary healthcare decision-making. Given the rising numbers of resettled refugees and migrants in primary care settings in the United States, there is an urgent need for patient-centred outcome research in practice-based research networks (PBRNs) with diverse ethnolinguistic communities. This study explored whether researchers, clinicians and patients would achieve consensus on (1) a common set of clinical problems that were applicable across a PBRN and (2) potential clinical interventions to address those problems to inform a patient-centred outcomes research (PCOR) study in a similar research network.
In this qualitative participatory health research study, patients from diverse ethnolinguistic communities and clinicians from seven practices in a US PBRN discussed preferences for PCOR responsive to patients and the clinicians who serve them in language-discordant settings. Researchers and an advisory panel that included patients and clinicians from each participating practice held regular advisory meetings to monitor progress on project milestones and solve emerging problems. Participants took part in 10 sessions using Participatory Learning in Action and the World Café methods to identify and prioritise their ideas, using questions set for them by the advisory panel. Data were analysed based on principles of qualitative thematic content analysis.
Participants identified common barriers in language-discordant healthcare settings, principally patient-clinician communication barriers and suggestions to overcome these barriers. A key finding was an unanticipated consensus about the need for attention to healthcare processes rather than a clinical research priority. Negotiation with research funders enabled further analysis of potential interventions for care processes to improve communication and shared decision-making in consultations and the practice as a whole.
PCOR studies should examine interventions for improving communication between patients from diverse ethnolinguistic communities and primary care staff if the sorts of harms experienced by patients experiencing language-discordant healthcare are to be reduced or prevented. Flexibility and responsiveness from funders to unanticipated findings are key structural supports for participatory health research in primary care clinical settings with this population and others who experience marginalisation and exclusion.
Patients and clinicians participated in the study both in the formulation of the study question, data collection, analysis and dissemination of these results; consented to their individual participation; and reviewed early drafts of the manuscript.
难民和移民在初级医疗保健决策空间中的参与度不理想。鉴于在美国初级保健环境中重新安置的难民和移民人数不断增加，因此迫切需要在具有多种语言文化背景的实践基础研究网络（PBRN）中开展以患者为中心的结局研究。本研究旨在探讨研究人员、临床医生和患者是否能够就以下两个问题达成共识：（1）一套适用于整个 PBRN 的共同临床问题；（2）解决这些问题的潜在临床干预措施，以为类似研究网络中的以患者为中心的结局研究（PCOR）提供信息。
在这项定性参与式健康研究中，来自美国 PBRN 的七个实践中的不同语言文化背景的患者和临床医生讨论了对患者和为语言不同的患者服务的临床医生有反应的 PCOR 的偏好。研究人员和一个咨询小组（包括来自每个参与实践的患者和临床医生）定期举行咨询会议，以监测项目里程碑的进展情况并解决新出现的问题。参与者使用参与式学习行动和世界咖啡馆方法参加了 10 次会议，以使用咨询小组为他们设定的问题来确定和优先考虑他们的想法。根据定性主题内容分析的原则对数据进行分析。
参与者确定了语言不同的医疗保健环境中的共同障碍，主要是医患沟通障碍和克服这些障碍的建议。一个关键发现是，出乎意料的是，人们一致认为需要关注医疗保健流程，而不是临床研究重点。与研究资助者进行谈判，使他们能够进一步分析改善沟通和共同决策的护理流程干预措施，以改善咨询和整个实践中的沟通和共同决策。
如果要减少或预防经历语言不同的医疗保健的患者所经历的伤害，PCOR 研究应检查改善来自不同语言文化背景的患者与初级保健人员之间沟通的干预措施。对于该人群和其他经历边缘化和排斥的人群来说，资金提供者的灵活性和对意外发现的响应是在具有这种人群的初级保健临床环境中进行参与式健康研究的关键结构支持。
患者和临床医生均参与了研究，包括研究问题的制定、数据收集、分析和结果传播；同意个人参与；并审查了手稿的早期草稿。
