Qualitative analysis of stakeholder perspectives on engaging Latinx patients in kidney-related research.
Qualitative analysis of stakeholder perspectives on engaging Latinx patients in kidney-related research.
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DOI：
10.1186/s12882-023-03128-y
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发表时间：
2023-03-30
期刊：
影响因子：
2.3
通讯作者：
Cervantes, Lilia
中科院分区：
文献类型：
--
作者：
Alvarado, Flor;Delgado, Cynthia;Nicholas, Susanne B.;Jaure, Allison;Cervantes, Lilia
关键词：
与非拉丁裔白色人相比，拉丁裔人因肾脏疾病而负担沉重，并且在肾脏相关研究中代表性不足。我们的目的是描述利益相关者对Latinx患者参与肾脏相关研究的观点。我们对两个在线主持的讨论和一个互动式在线调查进行了主题分析，其中包括参与者（即利益相关者）的开放文本回复，以及与Latinx肾病患者及其家人/护理人员的个人和/或专业经验。在8名利益相关者（女性：75%;拉丁裔：88%）中，有3名医生、1名护士、1名接受肾移植的肾病患者、1名政策制定者、1名哲学博士和1名非营利卫生组织的执行董事。我们确定了五个主题。大多数主题及其各自的次主题（括号内）反映了参与的障碍：缺乏个人相关性（无法与研究人员和营销资源联系起来，研究对自己、家庭和社区的好处不清楚）;恐惧和脆弱（移民问题，寻求护理的耻辱，对西医的怀疑）;后勤和财务障碍（参加临床试验的机会有限，自付费用，交通问题）;以及权力的不信任和不对称（与有限的英语能力或健康素养以及提供者偏见有关）。最后一个主题是在研究过程中激发兴趣和建立信任。为了克服参与肾脏相关研究的障碍，并在潜在的Latinx研究参与者之间建立信任，利益相关者建议采用文化响应和基于社区的策略。这些策略可以帮助确定当地的健康优先事项，加强研究招聘和保留策略，并建立伙伴关系，继续提升旨在提高肾脏疾病患者健康的研究工作。在线版本包含补充材料，可通过10.1186/s12882-023-03128-y获得。
Latinx individuals are disproportionally burdened by kidney diseases compared to non-Latinx White individuals and are underrepresented in kidney-related research. We aimed to describe stakeholder perspectives on Latinx patient engagement in kidney-related research. We conducted a thematic analysis of two online moderated discussions and an interactive online survey with open-text responses involving participants (i.e. stakeholders), with personal and/or professional experiences with Latinx patients with kidney diseases and their families/caregivers. Among the eight stakeholders (Female:75%; Latinx ethnicity:88%), there were three physicians, one nurse, one patient with kidney disease who received a kidney transplant, one policy maker, one Doctor of Philosophy, and one executive director of a non-profit health organization. We identified five themes. The majority of themes and their respective subthemes (in parentheses) reflected barriers to engagement: Lack of personal relevance (unable to relate to research staff and marketing resources, and unclear benefit of research to self, family, and community); fear and vulnerability (immigration concerns, stigma with seeking care, skepticism of Western medicine); logistical and financial barriers (limited opportunities to enroll in clinical trials, out-of-pocket costs, transportation issues); and distrust and asymmetry of power (related to limited English proficiency or health literacy, and provider bias). The last theme centered on stimulating interest and establishing trust in the research process. To overcome barriers to engagement in kidney-related research and establish trust among potential Latinx research participants, stakeholders recommended employing cultural responsiveness and community-based strategies. These strategies can help identify local health priorities, enhance research recruitment and retention strategies, and establish partnerships that continue to elevate research endeavors aiming to enhance the health of Latinx individuals with kidney diseases. The online version contains supplementary material available at 10.1186/s12882-023-03128-y.
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