Medical Mistrust Research Articles

Building a Community Partnership for the Development of Health Ministries Within the African American Community: The Triad Pastors Network

African Americans continue to have worse health outcomes despite attempts to reduce health disparities. This is due, in part, to inadequate access to healthcare, but also to the health care and medical mistrust experienced by communities of color. Churches and worship centers have historically served as cultural centers of trusted resources for educational, financial, and health information within African American communities and a growing number of collaborations have developed between academic institutions and community/faith entities. Herein, we describe the infrastructure of a true and sustainable partnership developed with > 100 prominent faith leaders within the Piedmont Triad region of North Carolina for the purpose of developing or expanding existing health ministries within houses of worship, to improve health literacy and overall health long-term. The Triad Pastors Network is an asset-based partnership between the Maya Angelou Center for Health Equity at Wake Forest University School of Medicine and faith leaders in the Piedmont Triad region of North Carolina that was created under the guiding principles of community engagement to improve health equity and decrease health disparities experienced by African American communities. A partnership in which co-equality and shared governance are the core of the framework provides an effective means of achieving health-related goals in a productive and efficient manner. Faith-based partnerships are reliable approaches for improving the health literacy needed to address health disparities and inequities in communities of color.

Engaging Community-Academic Partnerships: A Case Study of the Influence of Social Drivers of Health on Equitable Transitions of Cancer Care in the United States.

Enduring community-academic partnerships are essential for expediting the successful dissemination and implementation of promising interventions and programs, particularly for complex public health issues such as cancer prevention and control. The purpose of this case study was to understand the combined voices of a diverse group of stakeholders to outline the essential factors needed to translate research into sustainable cancer care within communities. System dynamics group model building was used to develop system maps of the factors impacting equitable access to cancer care services among three stakeholder groups (Group A: survivors and family members, n = 20; Group B: providers and administrators in community agencies/organizations, n = 40; Group C: administrators from a cancer institute, academic universities, foundations, and healthcare facilities that coordinate care, n = 25) in central Texas, USA. The lead researcher identified factors involved in transitions of care and their linkages with each other. The analysis of this work displays these connections visually. These models represent the ripple effect of factors influencing the transition of care for stakeholders who are invested in cancer care outcomes. All three groups identified medical mistrust, a culturally sensitive and diverse provider workforce, and care coordination as three essential factors (i.e., themes). Group A also identified caregiver navigation. The groups varied in their emphasis on upstream vs. downstream social drivers of health, with Group B emphasizing the former and Group C emphasizing the latter. To achieve cancer care equity, all stakeholder groups agreed on the importance of addressing the impact of social drivers as critical gaps. Eliminating or reducing these impacts allows each stakeholder group to work more efficiently and effectively to improve cancer care for patients.

Examining the roles of travel distance, medical mistrust, and cancer fatalism in the uptake of clinical cancer prevention among women in rural and urban US communities: A secondary data analysis

IntroductionRural adults are less likely to receive cancer screening than urban adults, likely due to systematic differences in community- and individual-level factors. The purpose of this study was to analyze the relative contributions of rurality, travel time, medical mistrust, and cancer fatalism in explaining uptake of clinical cancer prevention services. MethodsWe conducted a secondary data analysis of 2019–2020 survey data from women, ages 45–65, in rural and urban counties in central Pennsylvania, examining rurality, travel time to a primary care provider, medical mistrust, and cancer fatalism, as well as uptake of guideline-recommended colorectal cancer screening, cervical cancer screening, and preventive check-up. Final models used multivariable logistic regression to assess the relationships among study variables, controlling for participant demographics. ResultsAmong 474 participants, 48.9 % resided in rural counties. Most participants had received clinical cancer prevention services (colorectal cancer screening: 55.4 %; cervical cancer screening: 82.8 %; preventive check-up in the last year: 75.4 %). Uptake of services was less common among participants with higher medical mistrust (colorectal cancer screening: adjusted odds ratio [aOR] = 0.87, 95 % confidence interval [CI] = 0.76–1.00; cervical cancer screening: aOR = 0.79, 95 % CI = 0.63–1.00; last-year check-up: aOR = 0.74, 95 % CI = 0.63–0.88). ConclusionsPatient attitudes, particularly medical mistrust, may contribute to rural/urban disparities in clinical cancer prevention among women. Community- and individual-level interventions are needed to improve cancer outcomes in rural areas.

An examination of the independent and intersectional effects of racial and heterosexist medical mistrust on timing of sexual/reproductive health care visits among Black sexual minority women in the USA

Experiences of racism and heterosexism in medical settings are social and systemic barriers to ‘on-time’ receipt of sexual and reproductive health services among women with both racial and sexual minority identities. Medical mistrust based on experiences related to these dual identities is associated with avoidance and delays in care. However, investigators are just beginning to apply an intersectional lens to quantitatively understanding such barriers. The purpose of this study was to examine the independent and interaction effects of racial and heterosexist medical mistrust on timing of sexual/reproductive health care among Black sexual minority women who have sex with women and men. A total of 320 women participated in an online study of factors affecting sexual health in this population. Ordinal logistic regression was used to assess the independent and interaction effects of racial and heterosexist medical mistrust on self-reported time since last sexual/reproductive health visit. Results indicated an interaction between the two types of medical mistrust. Research on Black women who have sex with women and men’s experiences of racism and heterosexism in the US healthcare system can lead to the development of the comprehensive training programmes needed to alleviate medical mistrust among women with racial and sexual minority identities.

Discriminatory Healthcare Experiences and Medical Mistrust in Patients With Serious Illness

ContextThough discrimination in healthcare settings is increasingly recognized, the discriminatory experiences of patients with serious illness has not been well studied. ObjectivesDescribe racial differences in patient-reported experiences with discrimination in the healthcare setting and examine its association with mistrust. MethodsWe used surveys containing patient-reported frequency of discrimination using the Discrimination in Medical Setting (DMS) and Microaggressions in Health Care Settings (MHCS) scales, mistrust using the Group Based Medical Mistrust (GBMM) scale, and patient characteristics including patient-reported race, income, wealth, insurance status, and educational attainment. Univariable and multivariable linear regression models as well as risk ratios were used to examine associations between patient characteristics including self-reported race, and DMS, MHCS, and GBMM scores. ResultsIn 174 participants with serious illness, racially minoritized patients were more likely to report experiencing discrimination and microaggressions. In adjusted analyses, DMS scores were associated with elements of class and not with race. Black, Native American/Alaskan Native (NA/AN), and multiracial participants had higher MHCS scores compared to White participants with similar levels of income and education. Higher income was associated with lower GBMM scores in participants with similar DMS or MHCS scores, but Black and NA/AN participants still reported higher levels of mistrust. ConclusionIn this cross-sectional study of patients with serious illness, discriminatory experiences were associated with worse mistrust in the medical system, particularly for Black and NA/AN participants. These findings suggest that race-conscious approaches are needed to address discrimination and mistrust in marginalized patients with serious illness and their families.

"Just the Stigma Associated with PrEP Makes You Feel Like It's HIV Itself": Exploring PrEP Stigma, Skepticism, and Medical Mistrust Among Black Cisgender Women in Urban and Rural Counties in the U.S. Deep South.

Despite its effectiveness in HIV prevention, PrEP use among Black women is suboptimal. Notably in the Deep South, Black women have the lowest PrEP uptake rates among all US regions. To increase PrEP engagement, research suggests the implementation of structural and social interventions particular to the needs of Black women. The state of Alabama is of priority to federal HIV prevention initiatives; therefore, this study conducted focus groups among 47 cis-gender Black women in rural and urban Alabama counties, with the highest statewide HIV incidence rates, to understand perceptions of PrEP and decision-making processes. Deductive coding analysis was conducted and themes were finalized based on consensus among the two coders. Four themes were identified. Findings show stigma undergirds Alabaman Black women's decisions to engage in PrEP care. Moreover, women reported stigma stifled community-level education about PrEP. Despite these experiences, education was regarded as a strategy to decrease stigma and PrEP skepticism, the latter of which emerged as a prominent theme. Medical mistrust and healthcare engagement were the other emergent themes influencing participation in PrEP care. To ensure PrEP efforts meet the needs of Black cisgender women in Alabama counties, interventions must address longstanding stigma, increase educational initiatives, and ensure interventions consider women's experiences with medical mistrust and health care engagement.

Characterizing predictors of COVID-19 vaccine refusal in an urban southern California jail population

BackgroundCorrectional populations have been disproportionately affected by COVID-19, and many large outbreaks have occurred in jails and prisons. Vaccination is a key strategy to reduce the SARS-CoV-2 transmission in carceral settings. Although implementation can be challenging due to vaccine hesitancy and medical mistrust, correctional settings provide largely equitable healthcare access and present a unique opportunity to identify potential predictors of vaccine hesitancy independent of access issues. MethodsWe retrospectively analyzed electronic health record data for individuals offered COVID-19 vaccination at the Los Angeles County Jail between January 19, 2021, and January 31, 2023, and used multivariable logistic regression to determine predictors of COVID-19 vaccine refusal. ResultsOf the 21,424 individuals offered COVID-19 vaccination, 2,060 (9.6 %) refused. Refusal was associated with male sex ([aOR] = 2.3, 95 % CI (1.9, 2.8)), age 18–34 ([aOR] = 1.2, 95 % CI (1.1, 1.4), referent group: age 45–54), Black race ([aOR] = 1.2, 95 % CI (1.1, 1.4)), reporting ever being houseless ([aOR] = 1.2, 95 % CI (1.1, 1.3)), and having a history of not receiving influenza vaccination while incarcerated ([aOR] = 2.4, 95 % CI (2.0, 2.8)). When analyzing male and female populations separately, male-specific trends reflected those seen in the overall population, whereas the only significant predictor of vaccine refusal in the female population was not receiving influenza vaccination while in custody ([aOR] = 6.5, 95 % CI (2.4, 17.6)). ConclusionIdentifying predictors of vaccine refusal in correctional populations is an essential first step in the development and implementation of targeted interventions to mitigate vaccine hesitancy.

Medical Mistrust on Prostate Cancer Screening: A mixed method study among African Americans, Caribbean immigrants and African immigrants.

The contribution of medical mistrust to healthcare utilization delays has been gaining increasing attention. However, few studies have examined these associations among subgroups of Black men (African Americans, Caribbean, and African immigrants) in relation to prostate cancer (PCa). This study addresses this gap by assessing how medical mistrust affects PCa screening behavior and to further understand perceptions of medical mistrust among subgroups of Black men. This research employs a mixed-methods approach comprising two distinct phases. In Phase 1, a cross-sectional examination was conducted to evaluate the influence of medical mistrust toward healthcare organizations on prostate cancer screening among 498 Black men. In Phase 2, a qualitative investigation was undertaken to delve into the nuances of medical mistrust through six focus groups (n=51) and ten key informant interviews (n=10). Logistic regression and grounded theory methods were employed for data analysis. Quantitative findings unveiled disparities in mistrust among subgroups, with Caribbean immigrants exhibiting higher levels of medical mistrust. Nevertheless, individuals with a family history of PCa showed elevated likelihoods of undergoing screening, despite mistrust. Qualitative results revealed 1) differences in reasons for medical mistrust among Black subgroups, 2) cultural perceptions which influence medical mistrust and medical care seeking, 3) lack of education in relation to PCa that contributes to medical mistrust, 4) negative past experiences and poor provider communication contribute, and 5) when PCa directly affected one's life, either personally or within the family, there was a recognized importance placed on monitoring one's risk despite mistrust. While medical mistrust may not significantly deter healthcare utilization among individuals with a family history or diagnosis of PCa, it underscores the variability of medical mistrust and its underlying reasons among different Black subgroups.

Exploring Preventive Health Care Utilization Among Black/African American Men.

Black/African American (BAA) men have the lowest life expectancy among other major demographic groups in the United States, with BAA male mortality rates 40% higher than their White male counterparts. Despite known benefits of preventive health care utilization, BAA men are 43% more likely to use the emergency department for usual care. Many intersecting factors like medical mistrust and religion have been identified as common barriers BAA men face in health care utilization with few studies exploring factors that impact their current preventive health care utilization. In addition, BAA men's perceptions of health and ability to identify or seek help have always been disproportionately lower than other racial groups despite higher rates of preventable diseases. Using the tenets of the Andersen Healthcare Utilization Model, this cross-sectional study of 176 BAA men explores BAA men's current preventive health care practices while examining the intersection of predisposing, enabling, and need factors on BAA men's preventive health care utilization. While it is well known that higher income levels and higher education positively influence health care utilization, the intersection of religious affiliation and higher levels of medical mistrust was associated with BAA men's decreased engagement with health care as religion posed as a buffer to health care utilization. This study demonstrated that BAA men's perception of health differed by sexual orientation, educational status, and income. However, across all groups the participants' perspective of their health was not in alignment with their current health outcomes. Future studies should evaluate the impact of masculine norms as potential enabling factors on BAA men's preventive health care utilization.

Assessing the Predictors of COVID-19 Vaccine Hesitancy Among People Living with HIV/AIDS: A Scoping Literature Review

Background: The administration of the COVID-19 vaccine at some points in the COVID-19 pandemic resulted in a significant reduction in the spread, risk of complications, and death from coronavirus infection. However, in the face of hesitancy against COVID-19 vaccination springing from the novelty of the vaccines and safety concerns, vulnerable population to COVID-19 infection such as people living with HIV/AIDS (PLWHA) were showing higher hesitancy to COVID-19 vaccines than the general population. This scoping review aims to identify factors COVID-19 vaccine hesitancy among PLWHA. Methods: A scoping review was conducted to identify and summarize studies from all over the world on COVID-19 vaccine uptake/hesitancy among people living with HIV/AIDS (PLWHA). The Preferred Reporting Items for Systematic Review and Meta-analysis (PRISMA) Extension for scoping reviews was used. Articles written in English, peer-reviewed, published within the years 2021-2023, and conducted in any part of the world with sample population being PLWHA, and with an outcome of uptake/hesitancy towards the COVID-19 vaccine were included. Results: Fourteen articles met the inclusion criteria and were included in this review. The primary study settings were clinic and hospital-based and online self-reported. The prevalence of COVID-19 vaccine hesitancy was as high as 90.8% in an online survey done in the US and as low as 27.5% in a facility-based survey in China. The most common factors mentioned associated with COVID-19 vaccination were the fear of side effects of the COVID-19 vaccine, concerns about the safety of the vaccine, medical mistrust, vaccine novelty, disclosure of HIV status, and perceived interference with highly active antiretroviral therapy (HAART). Male gender, race, good knowledge of COVID-19 prevention practice, having a CD4 count > 200 cells (p=0.032) and lower or undetectable viral load (p<0.001) were identified as predictors of COVID-19 uptake.

Black social media influencers engage higher percentages of Black gay and bisexual men in online outreach for HIV prevention research relative to paid ads.

Influencer-based social media marketing campaigns are a popular strategy to engage customers in many non-research industries (e.g., retail), but have been increasingly used in public health campaigns to reach and engage specific populations. However, few studies have directly compared the performance of influencer-based marketing with other ad strategies (e.g., paid ads) in achieving these goals. From March to September 2023, we conducted an influencer-focused marketing campaign in which we identified and partnered with predominantly Black LGBTQ + influencers in the United States South to promote engagement in our ongoing research. We then used web analytics and interest form data to compare performance of influencer posts versus paid ads over the same time period. We contacted a total of 358 influencers, 20 of whom ultimately agreed to post (85% Black/African American) and made a total of 28 posts on our behalf. A significantly higher percentage of users who clicked through influencer posts were Black (40% vs. 15%), were not currently using pre-exposure prophylaxis (PrEP) (67% vs. 62%), had no history of PrEP use (78% vs. 72%), and reported higher medical mistrust (12% vs. 8%) compared to those who clicked through paid ads. The percentage of Black men who have sex with men who were at high HIV risk, who were not taking PrEP, had no history of PrEP, or were high in mistrust, were all 2-3 times higher among those who clicked through influencer posts relative to paid ads. Influencer-focused marketing may be a powerful tool to efficiently reach and engage high-priority and hard to reach populations.

Recommendations for Integrating Traditional Birth Attendants to Improve Maternal Health Outcomes in Low- and Middle-Income Countries.

Adverse maternal health outcomes and high rates of maternal mortality continue to disproportionately affect low- and middle-income countries (LMICs). With limited access to health facility care, many women in LMICs rely on traditional birth attendants (TBAs) to meet their maternal health needs. While some studies consider the use of TBAs to be problematic, others suggest the integration of TBAs into maternal healthcare to improve health outcomes. The aim of this study is to utilize extant research to provide recommendations for optimizing the role of TBAs in maternal healthcare in Haiti, a LMIC. Each recommendation builds upon previous global health research, programmatic work, and a series of research studies conducted in Haiti to better understand and improve maternal healthcare in low-resource settings. Recommendations for integrating TBAs in maternal health include: (1) Integrate TBAs throughout prenatal, perinatal, and postpartum care to provide culturally relevant physical and emotional support to mothers; (2) Build capacity among TBAs to identify high-risk situations and link patients to care; (3) create TBA-led efforts to improve coordination and care; (4) Establish a collaborative pipeline from TBAs to facility-based care; and (5) create inclusive facility environments for TBAs to help reduce medical mistrust among patients. TBAs occupy an important role in the maternal health of women in LMICs and have the potential to contribute toward improved maternal health outcomes. The recommendations provided herein can be used to aid practitioners and researchers in reducing maternal morbidity and mortality globally.

COVID-19 Vaccine Policy Implementation and Differential Vaccine Uptake Trajectories in Chicago Communities.

Since the onset of the COVID-19 pandemic, multiple public health interventions have been implemented to respond to the rapidly evolving pandemic and community needs. This article describes the scope, timing, and impact of coordinated strategies for COVID-19 vaccine uptake in Chicago for the first year of vaccine distribution. Using a series of interviews with public health officials and leaders of community-based organizations (CBOs) who participated in the implementation of the citywide COVID-19 vaccine outreach initiatives, we constructed a timeline of vaccine outreach initiatives. The timeline was matched to the vaccine uptake rates to explore the impact of the vaccine outreach initiatives by community area. Finally, we discussed the nature of policy initiatives and the level of vaccine uptake in relation to community characteristics. The Chicago Department of Public Health (CDPH) implemented myriad vaccine outreach strategies, including mass vaccination sites, improved access, and community-level vaccine campaigns. Protect Chicago+ was the primary vaccine outreach effort initiated by the CDPH, which identified 15 highly vulnerable community areas. More than 2.7 million (67%) Chicagoans completed the vaccine regimen by December 2021. Black (51.3%) Chicagoans were considerably less likely to be vaccinated than Asian (77.6%), White (69.8%), and Hispanic (63.6%) Chicago residents. In addition, there were significant spatial differences in the rate of COVID-19 vaccine completion: predominantly White and Hispanic communities, compared with Black communities, had higher rates of vaccine completion. The community outreach efforts to improve COVID-19 vaccine uptake in Chicago have shown the importance of community-engaged approaches in pandemic responses. Despite citywide efforts to build community infrastructure, Black communities had relatively lower levels of vaccine uptake than other communities. Broader social restructuring to mitigate disinvestment and residential segregation and to ameliorate medical mistrust will be needed to prepare for future pandemics and disasters.

Patient-centered or population-centered? How epistemic discrepancies cause harm and sow mistrust

Medical distrust is often conceived of as a problem of misinformation or ignorance. In this paper, I depart from this framework, attributing distrust instead to epistemic divergence between lay people and experts. Using data from a contraceptive side effects Facebook group and in-depth physician interviews, I find that providers employ a “body-as-subject” lens informed by population-health goals, while group members employ a “body-as-agent” lens that privileges individuality and bodily autonomy. Provider epistemologies are privileged, creating epistemic injustice and harm for patients. Ultimately, this erodes trust in providers and the medical community more broadly.

Do Not Throw Away Your Shot: Pilot Study in Improving Medical School Curricula Through Focused Vaccine Education

IntroductionWith widely prevalent vaccine hesitancy and medical mistrust, future healthcare providers require knowledge of vaccines and comfort discussing vaccines with patients. However, many U.S. medical schools do not offer formal or elective curricula focused on vaccine education. MethodsWe sought to identify the need for such a curriculum and student gaps in knowledge through a pilot study surveying first- and second-year medical students at a large Pennsylvania medical school to assess knowledge about vaccine initiatives/policies, comfort discussing vaccines, attitudes towards curricular changes, and effects of COVID-19 on willingness for vaccine education. ResultsMany participants (>40%) reported insufficient knowledge of vaccine policy, development and testing, and community vaccine initiatives. The majority (>50%) indicated discomfort discussing vaccines in a clinical setting. Importantly, 79% of participants reported insufficient coverage of vaccine topics in the current curriculum. 54% decisively wanted formal/mandatory education versus 72% decisively wanted elective education. Desiring formal education was associated with less comfort discussing vaccines overall and with vaccine-hesitant people in clinical settings. Reassuringly, 74% of participants noted the COVID-19 pandemic made them want to learn more about vaccines. Guided by these findings, we conducted a pilot elective teaching about vaccines through case studies, interactive discussions, and role-playing scenarios. Pre- and post-course surveys showed improvement of student knowledge in all vaccine-related topics assessed. ConclusionsThese data can inform development of formal and elective curricula that effectively prepare medical students for patients’ vaccine questions.

CHALLENGES AND OPPORTUNITIES IN RECRUITING DIVERSE OLDER ADULTS WHO ARE FRAIL FROM THE MAPS-B STUDY

Abstract Including diverse individuals at the research and participant levels are essential to improve the effectiveness of real-world interventions; however, there are challenges when including such individuals. Our study purpose was to report the challenges of recruiting diverse older adults for the Mapping Sedentary Behaviour study. Our methods were guided by Step 1 (“Establish Partnerships”) in the Knowledge-to-Action-Ethics Framework. We assembled a diverse team of eleven researchers, clinicians, and patient partners. To recruit a broad group of participants, we partnered with City Housing Hamilton, which provides subsidized housing for older adults. We met with the organization’s partnership development advisor who organized two recruitment orientations; 80 potential participants and returning attendees were present for both sessions. The organization provided coffee and donuts. Most attendees were from visible minorities and had visible disabilities (i.e., used a walker or cane). To build rapport, we met with attendees in groups of 5 to 6 to introduce the research team and explain the study. We recruited 13 participants (seven female, one transgender man; Morley FRAIL score≥3). Before their scheduled study visit, twelve participants dropped out citing medical mistrust (i.e., fearing unintentional medical tracking). The last participant dropped out after the initial study visit due to their family’s skepticism in research. Additionally, some individuals may have enrolled for financial incentives as they were interested in receiving immediate monetary compensation. We faced challenges when recruiting frail older adults from diverse backgrounds. Future studies should focus on developing methods to target medical mistrust with older adults and their families.

MAPPING SEDENTARY BEHAVIOUR USING WEARABLE DEVICES AND DIARIES IN OLDER ADULTS WITH FRAILTY: A FEASIBILITY STUDY

Abstract Older adults with frailty are sedentary. Prior interventions to reduce sedentary time in older adults have not been successful as there is little research about context (posture, location, purpose, social environment). There is limited evidence on feasible measures to assess context of sedentary behaviour in older adults. Our aim was to determine feasibility of measuring context of sedentary behaviour in older adults with frailty using objective and self-report measures. We defined “feasibility process” using recruitment (20 participants within two-months), retention (85%), and refusal (20%) rates and “feasibility resource” if the measures capture context and can be linked (e.g., sitting-kitchen-eating-alone), and are all participants willing to use the measures. Context was assessed using a wearable sensor for posture, indoor positioning system [IPS] for location, and electronic or hard-copy diary for purpose and social-context over three days in winter and spring. We approached 80 individuals, and 58 expressed interest; of the 58, 37 did not enroll due to lack of interest or medical mistrust (64% refusal). We recruited 21 older adults (72±7.3 years, 13 females, 13 frail) within two months and experienced two dropouts (90% retention). The measures captured one domain of context, but the hard copy was not completed with detail making it challenging to link with the other devices. Not all participants were willing to use the wearable devices or electronic diary; but we linked the measures of those who did. Future studies will need to determine the most feasible and valid method to assess the context of sedentary behaviour.

Exploring medical mistrust: from clinic to community

This introduction to the special issue, Exploring Medical Mistrust: From Clinic to Community, provides a conceptual framing of ‘medical mistrust’ from a critical social science lens. This special issue explores and unpacks the complex temporal, social and scalar relationships which are intertwined with contemporary manifestations of mistrust in medicine. We ask what social science and humanities disciplines can offer in relation to wider understandings of the processes driving resistance to and refusal of medical interventions, including but also beyond vaccines. We distil insights derived from diverse spaces of medical encounter, ambivalence and resistance that serve as arenas which generate mistrust. We bring this analysis to deepen an understanding of the frictions and affective relations which exist between vertical and horizontal relations which constitute health systems.

Silent suffering: the impact of sexual health challenges on patient-clinician communication and adherence to adjuvant endocrine therapy among Black women with early-stage breast cancer.

Adjuvant endocrine therapy (AET) increases sexual health challenges for women with early-stage breast cancer. Black women are more likely than women of other racial/ethnic groups to report adverse symptoms and least likely to initiate and maintain AET. Little is known about how sexual health challenges influence patient-clinician communication and treatment adherence. This study explores facilitators of and barriers to patient-clinician communication about sexual health and how those factors might affect AET adherence among Black women with early-stage breast cancer. We conducted 32 semi-structured, in-depth interviews among Black women with early-stage breast cancer in the U.S. Mid-South region. Participants completed an online questionnaire prior to interviews. Data were analyzed using thematic analysis. Participants' median age was 59 (range 40-78 years, SD = 9.0). Adverse sexual symptoms hindered participants' AET adherence. Facilitators of patient-clinician communication about sexual health included female clinicians and peer support. Barriers included perceptions of male oncologists' disinterest in Black women's sexual health, perceptions of male oncologists' biased beliefs about sexual activity among older Black women, cultural norms of sexual silence among Southern Black women, and medical mistrust. Adverse sexual symptoms and poor patient-clinician communication about sexual health contribute to lower AET adherence among Black women with early-stage breast cancer. New interventions using peer support models and female clinicians trained to discuss sexual health could ameliorate communication barriers and improve treatment adherence. Black women with early-stage breast cancer in the U.S. Mid-South may require additional resources to address sociocultural and psychosocial implications of cancer survivorship to enable candid discussions with oncologists.

Technology Access and Perceptions of Telehealth Services Among Young Adults Involved in the Court System

PurposeThis study examined access to technology and telehealth among young adults (ages 18–24) who were court-involved and were recruited from an alternative sentencing program in New York City. MethodsUsing sequential mixed methods design, we examined demographic factors linked with access to technology and perceived usefulness of the Internet among n = 321 young adults who were court-involved (75% male, 65% African American, 35% Latinx). We then conducted in-depth interviews with 27 young adults to elicit first-person account of their access to, interest in, and experience with technology and telehealth. ResultsAlthough most participants had access to a phone with a data plan, a substantial proportion reported inconsistent access to the technology critical to telehealth. Certain young adults were more likely to lack consistent access to the technology needed for telehealth, including Black young adults, males, those with less than a high school diploma, those with a history of homelessness, and those who had difficulties paying for basic necessities. Qualitative interviews revealed that most had a strong self-efficacy using technology, while distrust of technology, inexperience with and skepticism of telehealth, low perceived need for care, and medical mistrust were common significant barriers in this underserved population. DiscussionFindings underscored the critical need to address medical mistrust and increase access to and utilization of care among young adults who are court-involved. Results can inform the development and implementation of interventions designed to improve accessibility and acceptability of telehealth.