Health Literacy and Ethnic Minority Populations

This chapter will show how optimizing health literacy can benefit the delivery of healthcare to the population in a way that materially addresses the inequalities in the National Health Service (NHS). These inequalities adversely impact different population groups in different ways, for various reasons. However, ethnic minority populations are especially vulnerable to inequalities having an adverse effect on the delivery of healthcare to the population, thereby adversely affecting their access, engagement, and healthcare benefits and consequently their general health, wellbeing, and life expectancy. Optimizing health literacy in these populations will enable increased engagement and participation, thereby delivering healthcare more effectively to the population by tailoring it to their needs and addressing current inequalities.

Genetic Risk Factors for Alzheimer's Disease in Racial/Ethnic Minority Populations in the U.S.: A Scoping Review

Objectives: As the United States (U.S.) population rapidly ages, the incidence of Alzheimer's Disease and Related Dementias (ADRDs) is rising, with racial/ethnic minorities affected at disproportionate rates. Much research has been undertaken to test, sequence, and analyze genetic risk factors for ADRDs in Caucasian populations, but comparatively little has been done with racial/ethnic minority populations. We conducted a scoping review to examine the nature and extent of the research that has been published about the genetic factors of ADRDs among racial/ethnic minorities in the U.S.Design: Using an established scoping review methodological framework, we searched electronic databases for articles describing peer-reviewed empirical studies or Genome-Wide Association Studies that had been published 2005–2018 and focused on ADRD-related genes or genetic factors among underrepresented racial/ethnic minority population in the U.S.Results: Sixty-six articles met the inclusion criteria for full text review. Well-established ADRD genetic risk factors for Caucasian populations including APOE, APP, PSEN1, and PSEN2 have not been studied to the same degree in minority U.S. populations. Compared to the amount of research that has been conducted with Caucasian populations in the U.S., racial/ethnic minority communities are underrepresented.Conclusion: Given the projected growth of the aging population and incidence of ADRDs, particularly among racial/ethnic minorities, increased focus on this important segment of the population is warranted. Our review can aid researchers in developing fundamental research questions to determine the role that ADRD risk genes play in the heavier burden of ADRDs in racial/ethnic minority populations.

‘My Grandmother Never Told Me That Before!’

Hmong ethnic minority populations in Vietnam’s northern borderlands have a long history of oral tradition and story-telling. Yet with an historical absence of literacy and no self-created written archives, the first-hand knowledge and experiences of Hmong elders is seldom communicated beyond their kin. At the request of a Hmong community member we developed a collaborative, intergenerational oral history project that would allow stories of Hmong elders to be shared on the internet. Concurrently, we trained Hmong youth in research methods, helping to improve their English skills and contribute to inter-generational knowledge transfer. Drawing on debates regarding collaborative North-South ethnography, positionality and critical reflexivity, and feminist fieldwork approaches, we contemplate our roles as two Global North researchers interacting with Global South ethnic minority youth and elders, and the degree to which we were able to help support the creation of subaltern counter-narratives to Vietnamese state discourses of upland minority histories.’

Understanding Malaria Persistence: A Mixed-Methods Study on the Effectiveness of Malaria Elimination Strategies in South-Central Vietnam

Despite the scale-up of vector control, diagnosis and treatment, and health information campaigns, malaria persists in the forested areas of South-Central Vietnam, home to ethnic minority populations. A mixed-methods study using an exploratory sequential design was conducted in 10 Ra-glai villages in Bac Ai district of Ninh Thuan province to examine which social factors limited the effectiveness of the national malaria elimination strategy in the local setting. Territorial arrangements and mobility were found to directly limit the effectiveness of indoor residual spraying and long-lasting insectidical treated nets (LLINs). Households (n=410) were resettled in the “new villages” by the government, where they received brick houses (87.1%) and sufficient LLINs (97.3%). However, 97.6% of households went back to their “old villages” to continue slash-and-burn agriculture. In the old village, 48.5% of households lived in open-structured plot huts and only 5.7% of them had sufficient LLIN coverage. Household representatives believed malaria could be cured with antimalarials (57.8%), but also perceived non-malarial medicines, rituals, and vitamin supplements to be effective against malaria. Household members (n = 1,957) used public health services for their most recent illness (62.9%), but also reported to buy low-cost medicines from the private sector to treat fevers and discomfort as these were perceived to be the most cost-effective treatment option for slash-and-burn farmers. The study shows the relevance of understanding social factors to improve the uptake of public health interventions and calls for contextually adapted strategies for malaria elimination in ethnic minority populations in Vietnam and similar settings.

Unsupervised Machine Learning to Detect and Characterize Barriers to PrEP Therapy: A Multiplatform Social Media Study (Preprint)

BACKGROUND Among racial and ethnic minority groups, the risk of HIV infection is an ongoing public health challenge. PrEP (pre-exposure prophylaxis) is highly effective for preventing HIV when taken as prescribed. However, there is a need to understand experiences, attitudes, and barriers of PrEP for racial and ethnic minority populations, and sexual minority groups. OBJECTIVE This infodemiology study aimed to leverage big data and unsupervised machine learning to identify, characterize, and elucidate on experiences and attitudes regarding perceived barriers associated with uptake and adherence to PrEP therapy. The study also specifically examined self-reported experiences from racial or ethnic populations and sexual minority users. METHODS The study used data mining approaches to collect posts from popular social media platforms Twitter, YouTube, Tumblr, Instagram, and Reddit. Posts were selected by filtering for keywords associated with PrEP, HIV, and approved PrEP therapies. We analyzed data using unsupervised machine learning followed by manual annotation using a deductive coding approach to characterize PrEP and other HIV prevention-related themes discussed by users. RESULTS We collected a total of 522,430 posts over a 60-day period, including 408,637 (78.22%) Tweets, 13,768 (2.63%) YouTube comments, 8,728 (1.67%) Tumblr posts, 88,177 (16.88%) Instagram posts, and 3,120 (0.60%) Reddit posts. After applying unsupervised machine learning and content analysis, a total of 785 posts were identified that specifically related to barriers to PrEP and were grouped into three major thematic domains including the: (a) provider level (n=13 posts, 1.66%); (b) patient-level (n=570, 72.61%), and (c) community level (n=166, 21.15%). The main barriers identified in these categories included those associated with knowledge (lack of knowledge about PrEP); access issues (lack of insurance coverage, no prescription, and impact of COVID-19 pandemic); and adherence (subjective reasons for why users terminated PrEP or decided not to start PrEP, including side effects, alternative HIV prevention measures, and social stigma). Among all PrEP posts, we identified 320 (40.76%) posts where users self-identified as racial or ethnic minority, or as a sexual minority population with their own specific PrEP barriers and concerns. CONCLUSIONS Both objective and subjective reasons were identified as barriers reported by social media users when initiating, accessing, and adhering to PrEP. Though ample evidence supports PrEP as an effective HIV prevention strategy, user-generated posts nevertheless provide insights into what barriers are preventing people from broader adoption of PrEP, including topics that are specific to two different groups of sexual minorities and racial and ethnic minority populations. Results have the potential to inform future health promotion and regulatory science approaches that can reach these HIV/AIDS communities who may benefit from PrEP.

Diverse, Culturally Rich Approaches to Family Care in the United States

Despite the projected rise in the diversity of caregivers and caregiving in the US, the health system is not prepared to accommodate this growth. Interventions and supports often are not adequately tailored to meet the cultural needs of older adults. Additionally, the limited interventions available for racial/ethnic minority populations frequently fail to capture and report culturally tailored perspectives. Therefore, the purpose of this presentation is to describe how culture influences caregiving in the US. Specifically, it will: (1) provide a contemporary definition of culture; (2) identify cultural domains that impact caregiving; (3) offer examples of how caregiving is influenced by different cultural/demographic backgrounds; (4) provide examples of culturally tailored caregiving programs, and (5) discuss how to approach cultural needs that may not be addressed by current interventions.

Socioeconomic deprivation and ethnicity inequalities in disruption to NHS hospital admissions during the COVID-19 pandemic: a national observational study

IntroductionHospital admissions in many countries fell dramatically at the onset of the COVID-19 pandemic. Less is known about how care patterns differed by patient groups. We sought to determine whether areas with higher levels of socioeconomic deprivation or larger ethnic minority populations saw larger falls in emergency and planned admissions in England.MethodsWe conducted a national observational study of hospital care in the English National Health Service (NHS) in 2019–2020. Weekly volumes of elective (planned) and emergency admissions in 2020 compared with 2019 were calculated for each census area. Multiple linear regression analysis was used to estimate the reductions in volumes for areas in different quintiles of socioeconomic deprivation and ethnic minority populations after controlling for national time trends and local area composition.ResultsBetween March and December 2020, there were 35.5% (3.0 million) fewer elective admissions and 22.0% (1.2 million) fewer emergency admissions with a non-COVID-19 primary diagnosis than in 2019. Areas with the largest share of ethnic minority populations experienced a 36.7% (95% CI 24.1% to 49.3%) larger reduction in non-primary COVID-19 emergency admissions compared with those with the smallest. The most deprived areas experienced a 10.1% (95% CI 2.6% to 17.7%) smaller reduction in non-COVID-19 emergency admissions compared with the least deprived. These patterns are not explained by differential prevalence of COVID-19 cases by area.ConclusionsEven in a healthcare system founded on the principle of equal access for equal need, the impact of COVID-19 on NHS hospital care for non-COVID patients has not been spread evenly by ethnicity and deprivation in England. While we cannot conclusively determine the mechanisms behind these differences, they risk exacerbating prepandemic health inequalities.

Influence of Health Beliefs on COVID-19 Vaccination among Individuals with Cancer and Other Comorbidities in Puerto Rico

Ethnic minority populations are more likely to suffer from chronic comorbidities, making them more susceptible to the poor health outcomes associated with COVID-19 infection. Therefore, ensuring COVID-19 vaccination among vulnerable populations is of utmost importance. We aimed to investigate health behaviors and perceptions of COVID-19 vaccination among adults self-reporting diagnosis of cancer and of other chronic comorbidities in Puerto Rico (PR). This secondary analysis used data from 1911 participants who completed an online survey from December 2020 to February 2021. The Health Belief Model was used to measure perceptions surrounding COVID-19 vaccination among individuals self-reporting diagnosis of cancer and of other chronic comorbidities, and healthy adults. Among study participants, 76% were female, 34% were 50 years or older, 5% self-reported cancer diagnosis, and 70% had other chronic comorbidities. Participants self-reporting a cancer diagnosis had two times higher odds of getting vaccinated than healthy individuals (95% CI: 1.00–4.30). Compared to healthy participants, those self-reporting being diagnosed with cancer and those with chronic conditions other than cancer had significantly higher perceived COVID-19 susceptibility and severity. Our findings elucidate the effect of disease status on health-related decision-making and highlights information needed to be included in education campaigns to increase vaccine uptake among ethnic minority populations.