Structural and Psychosocial Challenges Among Underserved Patients Receiving Hemodialysis During and Beyond the COVID-19 Pandemic: A Qualitative Study.
Structural and Psychosocial Challenges Among Underserved Patients Receiving Hemodialysis During and Beyond the COVID-19 Pandemic: A Qualitative Study.
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DOI：
10.1016/j.xkme.2023.100717
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发表时间：
2023-11
期刊：
影响因子：
3.9
通讯作者：
Schmidt, Insa M
中科院分区：
文献类型：
--
作者：
Shohet, Merav;Nguyen, Nicole H;Stern, Lauren D;Waikar, Sushrut S;Schmidt, Insa M
美国的种族和族裔群体受到慢性肾病和进行性肾衰竭的影响尤为严重，并且面临着更多的社会经济和社会心理挑战。然而，尽管社会科学研究预测这些群体的脆弱性呈指数级增长，但这些患者的社会环境和污名如何影响他们在 2019 年冠状病毒病 (COVID-19) 大流行之前和期间的疾病经历和应对能力，尚未得到充分记录。使用半结构化访谈的定性研究，以引出患者个体关于他们在 COVID-19 大流行之前和期间的个人疾病经历、他们面临的任何挑战以及他们的支持来源的叙述。通过有目的的抽样，我们从马萨诸塞州波士顿一家安全网医院附属中心招募了 20 名接受维持性血液透析的成年患者。采访内容被录音、转录，并使用主题内容分析进行分析，以确定患者在大流行之前和期间面临的挑战和支持。在该研究的 20 名患者中，9 名是女性，18 名自认为是黑人或非裔美国人。大多数患者描述了三个主要主题：（1）耻辱和耻辱化是他们生活经历的核心要素； (2) 大流行是一次艰难的经历，但并未使其与大流行前的生活完全决裂； (3) 社交网络，特别是家人、朋友和宗教团体，作为应对使人衰弱的疾病至关重要的支持来源。研究结果是否适用于其他环境尚不清楚，因为参与者是从单一安全网城市医院环境中的中心招募的。社会心理和环境因素，包括制度性种族主义和污名化，在加重患有肾病的种族和族裔个人所承受的负担方面发挥着重要作用，这些人现在还面临着后来变成地方性流行病的 COVID-19 大流行。这项研究的结果可以为制定旨在缓解影响肾病患者福祉和健康结果的紧张局势和结构性条件的政策干预措施提供参考。美国少数族裔群体的进行性肾衰竭发生率最高，并面临更多的社会经济和社会心理挑战。我们采访了 20 名在安全网医院附属中心接受维持性血液透析治疗的患者。患者将污名化描述为他们生活经历的核心要素，而这场流行病是一个艰难的挑战（但不是完全破裂），加剧了他们与疾病相关、种族相关和阶级相关的污名化的斗争。社交网络，特别是家人、朋友和宗教团体，是应对疾病至关重要的支持的主要来源。这项研究的结果可以为医疗保健提供者和社区工作者提供信息，并指导政策干预措施的制定，以便为这些患者提供更好的支持。
Racial and ethnic minority groups in the United States are disproportionately affected by chronic kidney disease and progressive kidney failure and face significantly more socioeconomic and psychosocial challenges. However, how such patients’ social environment and stigmatization shape their illness experiences and abilities to cope before and during the coronavirus disease 2019 (COVID-19) pandemic has not been well documented, even as social scientific research predicts these groups’ exponential vulnerability. Qualitative study using semistructured interviews to elicit individual patient narratives about their personal illness experiences before and during the COVID-19 pandemic, any challenges they faced, and their sources of support. Using purposive sampling, we recruited 20 adult patients receiving maintenance hemodialysis from centers affiliated with a safety-net hospital in Boston, Massachusetts. Interviews were audiotaped, transcribed, and analyzed using thematic content analysis to identify patients’ challenges and supports before and during the pandemic. Of the 20 patients in the study, 9 were women, and 18 self-identified as Black or African American. Three main themes emerged, whereby most patients described: (1) stigma and stigmatization as a central element of their life experience; (2) the pandemic as a difficult experience but not a complete rupture from their prepandemic life; and (3) social networks, particularly family, friends, and religious communities, as sources of support crucial to coping with their debilitating illness. Whether the findings apply to other settings is unknown, as participants were recruited from centers in a single safety-net urban hospital setting. Psychosocial and environmental factors, including institutional racism and stigmatization, play significant roles in amplifying the burdens shouldered by racial and ethnic minority individuals with kidney disease who now also face the COVID-19 pandemic that has since turned endemic. The results of this study can inform the development of policy interventions aimed at alleviating tensions and structural conditions that impinge on kidney disease patients’ wellbeing and health outcomes. Members of racial and ethnic minority groups in the United States experience the highest rates of progressive kidney failure and face significantly more socioeconomic and psychosocial challenges. We interviewed 20 patients who receive maintenance hemodialysis treatment from centers affiliated with a safety-net hospital. Patients described stigmatization as a central element of their life experience and the pandemic as a difficult challenge (but not a complete rupture) that added to their struggles with illness-related, race-related, and class-related stigmas. Social networks, particularly family, friends, and religious communities, are key sources of support crucial to coping with illness. Findings from this study can inform health care providers and community workers and guide the development of policy interventions to provide better support for these patients.