"They don't care to study it": Trust, race, and health care experiences among patient-caregiver dyads with multiple myeloma.

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.

"A lot to manage and still have some kind of a life": How multiple myeloma impacts the function and quality-of-life of Black-White patient-caregiver dyads.

BACKGROUND: Multiple myeloma (MM) is an incurable debilitating blood cancer associated with the lowest health related quality of life (HRQoL) of all cancers. With nearly 88% of adults aged ≥55 years at diagnosis, age-associated physical losses, comorbidities, and social factors contribute to worsening HRQoL. This qualitative study assessed dyadic (patient-informal caregiver) perspectives on the factors contributing to HRQoL in MM survivors. METHODS: We recruited 21 dyads from the UNC-Chapel Hill Lineberger Comprehensive Cancer between 11/2021 and 04/2022. Participants completed a single dyadic semistructured interview capturing broad perspectives on MM. We used ATLAS. ti v 9 for project management and to facilitate data analysis using the Sort and Sift, Think and Shift approach (ResearchTalk, Inc.). This iterative approach allowed the exploration and identification of themes within and across transcripts. RESULTS: The mean age at enrollment was 71 years (median: 71, range: 57-90) for patients and 68 years (median 67, range: 37-88) for caregivers. All dyads were racially concordant (11 Black/AA and 10 White). However, we aggregated the findings due to no consistent racial differences. Six themes related to (1) physical burden, (2) treatment challenges, (3) losses of independence, (4) caregiver burden, (5) patient and caregiver perseverance, and (6) adjustment to a new normal were identified. Dyads also experienced MM together, resulting in patients and caregivers experiencing changes in their ability to engage in physical and social activities, which further contributed to poor HRQoL. Patients' increased need for social support led to shifts in the caregiver roles, resulting in caregivers feeling burdened by their responsibilities. All dyads acknowledged the need for perseverance and adaptability to a new normal with MM. CONCLUSION: The functional, psychosocial, and HRQoL of older patients with MM and their caregivers remain impacted ≥6 months after a new diagnosis highlighting clinical and research opportunities to focus on preserving or improving the health of dyads living with MM.

Rural resilience during COVID-19: the lived experience of North Carolinian rural-dwelling cancer caregivers.

PURPOSE: To illuminate the lived experience of resilience in rural-dwelling North Carolinian cancer caregivers at the intersection of cancer and the COVID-19 pandemic. METHODS: In spring, 2020, we recruited self-identified primary caregivers (CGs) for a relative/friend with cancer living in a rural area. We conducted cross-sectional semi-structured interviews and then thematically analyzed transcripts to identify and categorize instances of stressors and benefit-finding. RESULTS: Of the 24 participants, 29% were < 50 years old, 42% identified as non-Hispanic Black, 75% were women, and 58% were spousal CGs. Most care recipients (CRs) had stage IV cancer (n = 20) and cancer types varied. Participants played a variety of roles in caregiving and experienced stressors related to caregiving demands (e.g., conflicts with other responsibilities), rurality (e.g., transportation), and the COVID-19 pandemic (e.g., new visitor policy at hospital). Despite stressful experiences, participants also identified many positive aspects of their caregiving. Five domains of benefit-finding were identified: appreciation (e.g., gratitude toward their ability to care for CRs), CG-CR dyad relationship dynamics (e.g., increased closeness), interpersonal relationship dynamics (e.g., perceived peer support), faith (e.g., ability to cope through praying), and personal growth (e.g., new skills learned from caregiving). CONCLUSION: Rural-dwelling cancer caregivers from mixed sociodemographic backgrounds identified a diverse range of benefits from caregiving, despite experiencing multiple stressors, including emergent stressors from the COVID-19 pandemic. Healthcare delivery serving rural communities may consider expanding transportation assistance and boosting benefit-finding to ameliorate stress in cancer caregivers.