ArticleCancer medicine2024
"They don't care to study it": Trust, race, and health care experiences among patient-caregiver dyads with multiple myeloma.
Article in Cancer medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
9 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Why do people trust (or mistrust) health organizations? A systematic review.International journal for equity in health · 2026Pooled it
- Multiple Myeloma Screening Education: A Community-Based Health Literacy Intervention.Cancer research communications · 2026Article
- Understanding the impact of social determinants of health in hematology: a scoping review of trends across journals and over time.Blood advances · 2026Article
- "First, Trust Needs to Develop": Hematologists' Perspectives on Factors Influencing Black Persons' Participation in Clinical Trials.Journal of racial and ethnic health disparities · 2025Article
- Long-Term Trends and Projections of Multiple Myeloma Across Three Continents: A Comparative Study of China, the United States of America, the Russian Federation, England and France (1990-2036).Cancer medicine · 2025Article
- Medical Mistrust in Online Cancer Communities: A Large-Scale Analysis Across 10 Cancer Entities.Psycho-oncology · 2025Article
- Addressing Health Disparities in Hematologic Malignancies: from Genes to Outreach.Blood cancer discovery · 2025Review
- "They don't care to study it": Trust, race, and health care experiences among patient-caregiver dyads with multiple myeloma.Cancer medicine · 2024Article
- A Holistic Insight into the Caregivers of Patients with Multiple Myeloma: Burden and Opportunities for Interventions - A Scoping Review.Indian journal of palliative careReview
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
backgroundMedical 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. STUDY PURPOSE: This study qualitatively examines the experiences of Black/AA and White dyads (patient with MM and adult caregiver) to gain insights into these phenomena.
methodsFrom 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).
resultsWe 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.
conclusionOur 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.
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