PDF(Pubmed)
Abstract：
BACKGROUND: Medical mistrust, rooted in unethical research, is a barrier to cancer-related health care for Black/African American (AA) persons. Understanding trust, mistrust, and health care experiences is crucial, especially in multiple myeloma (MM), which disproportionately burdens Black/AA persons in incidence and survival.
OBJECTIVE: This study qualitatively examines the experiences of Black/AA and White dyads (patient with MM and adult caregiver) to gain insights into these phenomena.
METHODS: From November 2021 to April 2022, we recruited 21 dyads from the UNC Lineberger Comprehensive Cancer Center. Participants completed a sociodemographic survey and a 60-90 min semi-structured interview. We used ATLAS.ti v9 for project management and to facilitate data analysis using the Sort and Sift, Think and Shift approach (ResearchTalk Inc).
RESULTS: We interviewed 21 racially concordant dyads (11 Black/AA, 10 White) with mean patient ages of 70 (Black/AA) and 72 (White) at enrollment. Both Black/AA and White caregivers had a mean enrollment age of 68. The mean duration from MM diagnosis to enrollment for all patients was 5.5 years. Four key themes emerged: (1) knowledge and trust, (2) heightened emotions and discomfort, (3) differing mental constructs of health care experiences, and (4) mitigating mistrust, which varied by self-identified race. Black/AA participants had greater knowledge of historical events like the U.S. Public Health Service Untreated Syphilis Study at Tuskegee and carried the emotional burden longer. They also emphasized self-learning and self-guided research about MM for informed medical decision-making. Both Black/AA and White dyads emphasized the pivotal role of patient-provider relationships and effective communication in fostering trust and addressing concerns.
CONCLUSIONS: Our study offers contextual insights into the enduring challenges of medical mistrust, particularly within the Black/AA community, and its implications for patients and caregivers accessing and receiving MM-related care. Future studies should leverage these insights to guide the development of multilevel interventions addressing medical mistrust within the Black/AA community.
OBJECTIVE: This study qualitatively examines the experiences of Black/AA and White dyads (patient with MM and adult caregiver) to gain insights into these phenomena.
METHODS: From November 2021 to April 2022, we recruited 21 dyads from the UNC Lineberger Comprehensive Cancer Center. Participants completed a sociodemographic survey and a 60-90 min semi-structured interview. We used ATLAS.ti v9 for project management and to facilitate data analysis using the Sort and Sift, Think and Shift approach (ResearchTalk Inc).
RESULTS: We interviewed 21 racially concordant dyads (11 Black/AA, 10 White) with mean patient ages of 70 (Black/AA) and 72 (White) at enrollment. Both Black/AA and White caregivers had a mean enrollment age of 68. The mean duration from MM diagnosis to enrollment for all patients was 5.5 years. Four key themes emerged: (1) knowledge and trust, (2) heightened emotions and discomfort, (3) differing mental constructs of health care experiences, and (4) mitigating mistrust, which varied by self-identified race. Black/AA participants had greater knowledge of historical events like the U.S. Public Health Service Untreated Syphilis Study at Tuskegee and carried the emotional burden longer. They also emphasized self-learning and self-guided research about MM for informed medical decision-making. Both Black/AA and White dyads emphasized the pivotal role of patient-provider relationships and effective communication in fostering trust and addressing concerns.
CONCLUSIONS: Our study offers contextual insights into the enduring challenges of medical mistrust, particularly within the Black/AA community, and its implications for patients and caregivers accessing and receiving MM-related care. Future studies should leverage these insights to guide the development of multilevel interventions addressing medical mistrust within the Black/AA community.
摘要：
背景：医疗不信任，植根于不道德的研究，是黑人/非裔美国人（AA）与癌症相关的医疗保健的障碍。理解信任，不信任,医疗保健经验至关重要，尤其是多发性骨髓瘤（MM），这给黑人/AA人的发病率和生存率带来了不成比例的负担。
目的：本研究定性地检查了黑色/AA和白色二元（MM患者和成人护理人员）的经历，以了解这些现象。
方法：从2021年11月到2022年4月，我们从UNCLineberger综合癌症中心招募了21个二元组。参与者完成了社会人口统计学调查和60-90分钟的半结构化访谈。我们使用ATLAS。tiv9用于项目管理，并使用Sort和Sift促进数据分析，思考和转变方法(ResearchTalkInc)。
结果：我们采访了21个种族一致的dyad(11个Black/AA，10白色)，入选时患者平均年龄为70岁(黑色/AA)和72岁(白色)。黑人/AA和白人护理人员的平均入学年龄均为68岁。所有患者从MM诊断到入组的平均持续时间为5.5年。出现了四个关键主题：(1)知识和信任，(2)情绪和不适加剧，(3)医疗保健经验的不同心理结构，(4)减轻不信任，因自我认同的种族而异。Black/AA参与者对诸如Tuskegee的美国公共卫生服务未治疗梅毒研究之类的历史事件有了更多的了解，并且承受了更长的情感负担。他们还强调了有关MM的自我学习和自我指导研究，以进行明智的医疗决策。Black/AA和Whitedyads都强调了患者与提供者之间的关系和有效沟通在促进信任和解决担忧方面的关键作用。
结论：我们的研究为医学不信任的持久挑战提供了背景见解，特别是在黑人/AA社区内，及其对患者和护理人员获得和接受MM相关护理的影响。未来的研究应利用这些见解来指导多层次干预措施的发展，以解决Black/AA社区内的医疗不信任。
目的：本研究定性地检查了黑色/AA和白色二元（MM患者和成人护理人员）的经历，以了解这些现象。
方法：从2021年11月到2022年4月，我们从UNCLineberger综合癌症中心招募了21个二元组。参与者完成了社会人口统计学调查和60-90分钟的半结构化访谈。我们使用ATLAS。tiv9用于项目管理，并使用Sort和Sift促进数据分析，思考和转变方法(ResearchTalkInc)。
结果：我们采访了21个种族一致的dyad(11个Black/AA，10白色)，入选时患者平均年龄为70岁(黑色/AA)和72岁(白色)。黑人/AA和白人护理人员的平均入学年龄均为68岁。所有患者从MM诊断到入组的平均持续时间为5.5年。出现了四个关键主题：(1)知识和信任，(2)情绪和不适加剧，(3)医疗保健经验的不同心理结构，(4)减轻不信任，因自我认同的种族而异。Black/AA参与者对诸如Tuskegee的美国公共卫生服务未治疗梅毒研究之类的历史事件有了更多的了解，并且承受了更长的情感负担。他们还强调了有关MM的自我学习和自我指导研究，以进行明智的医疗决策。Black/AA和Whitedyads都强调了患者与提供者之间的关系和有效沟通在促进信任和解决担忧方面的关键作用。
结论：我们的研究为医学不信任的持久挑战提供了背景见解，特别是在黑人/AA社区内，及其对患者和护理人员获得和接受MM相关护理的影响。未来的研究应利用这些见解来指导多层次干预措施的发展，以解决Black/AA社区内的医疗不信任。
