{"doi":"10.1002/cam4.7297","title":"“<i>They don't care to study it</i>”: Trust, race, and health care experiences among patient‐caregiver dyads with multiple myeloma","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. 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. 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. CONCLUSION: 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.","journal":"Cancer Medicine","year":2024,"id":453641,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":8,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.9627,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2024-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":993997,"name":"Jiona A. Mills","orcid":null,"position":1,"is_corresponding":false},{"id":1276496,"name":"Joseph Telfair","orcid":"0000-0002-0682-5244","position":2,"is_corresponding":false},{"id":993996,"name":"Gabriell Erisnor","orcid":null,"position":3,"is_corresponding":false},{"id":316812,"name":"Tanya M. Wildes","orcid":"0000-0002-1479-7626","position":4,"is_corresponding":false},{"id":993492,"name":"Lauren C. Bates‐Fraser","orcid":"0000-0003-1582-5593","position":5,"is_corresponding":false},{"id":261928,"name":"Andrew F. Olshan","orcid":"0000-0001-9115-5128","position":6,"is_corresponding":false},{"id":340409,"name":"Erin E. Kent","orcid":"0000-0003-2503-2191","position":7,"is_corresponding":false},{"id":535400,"name":"Hyman B. Muss","orcid":"0000-0003-2862-9970","position":8,"is_corresponding":false},{"id":969209,"name":"Paul Mihas","orcid":"0000-0003-1651-4121","position":9,"is_corresponding":false},{"id":925582,"name":"Shakira J. Grant","orcid":"0000-0002-8481-3046","position":0,"is_corresponding":true}],"reference_count":62,"raw_metadata":null,"created_at":"2026-07-19T02:03:03.428151Z","pmid":"38770636","pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}