Abstract

Background: Based on POWER study: Promoting and owning empowerment and resilience among African, Caribbean, and Black Canadian (ACB) youth, this paper explored the contextual factors that expose ACB youth to HIV infection.

Method: We conducted six focused community-mapping sessions with 43 purposively drawn ACB youth living in Windsor, Canada. Based on socio-environmental approach, we investigated a number of issues including, where to find ACB people, places afraid to go, places to find casual partners, where they spend leisure time, healthy and unhealthy places.

Results: The findings showed that ACB population mainly resides in poor areas, with close proximity to bars, strip shops, recreational/sports places. And, multifaceted factors, such as economic deprivation, marginalization, discrimination, and substance use provided an enabling environment for ACB youth exposure to HIV/AIDS. Conclusion: Future HIV/AIDS prevention must be locality specific and culturally sensitive, by taking into account individual, structural, environmental and socio-cultural factors in future HIV prevention strategies.

Keywords

HIV/AIDS, ACB youth, Community mapping, Contextual factors

Introduction

According to 2018 HIV surveillance report in Canada, Ontario accounted for the highest population of HIV cases (39.2%), with the second highest reported cases among 20-29 at 22.5% Gay, bisexual and men who have sex with men (gbMSM) continue to account for the highest exposure to HIV 58.1%, while heterosexual transmission accounts for 32.3%, of which 15.4% are from HIV endemic countries [1]. Similarly in 2017, Ontario accounted for the highest population of new HIV cases (38.9%), and ACB people infected with HIV through heterosexual contact account for 20% of the estimated total of all HIV-positive people, and youth aged 15 to 29 accounted for 23% of HIV cases, and between 2016 to 2017 a 17% increase in 15 to 19 and 4% decrease among 20 to 29 [2]. More so, the Black population, which makes up 3.9% of the population accounts for 22.5% of persons living with HIV in the province [3]. It also has been estimated that in Ontario, Windsor diagnosis of HIV new cases of 5.7 was fifth, with Toronto having the highest diagnosis rate of 15.7 [4].

Community-based and participatory action research programs on HIV/AIDS risk behaviors have reported that mapping of locations with high concentrations of bars, shops, strip clubs, trucking places, sex workers and other geographical places is crucial in identifying at-risk places, groups, as well as, in designing and implementing effective and sustainable HIV prevention interventions [5]. Community mapping has been used to address development and health issues across multidisciplinary sectors, particularly health issues like infectious diseases [6-8] and HIV/AIDS [9,10]. Other focus of community mapping includes HIV prevention intervention [11,12], and health promotion [13], sex and HIV education [14].

However, mapping as a social research approach has become a growing basis for many interventions in developing countries/contexts, on development interventions to promote HIV prevention [15-17]. Community mapping is a mixed method approach that involves brainstorming and geographical mapping to visually present ACB youth ideas and perceptions of their vulnerability and resilience to HIV/AIDS. Participants actively participated in ensuring that the maps are explicit, representing and providing adequate knowledge that represents the diverse views of participants.

The present paper explores the factors that expose young ACB youth to HIV infection in a border city, Windsor, Ontario Canada. It focuses on individual, interpersonal, societal and environmental factors (e.g. access to resources, oppression, discrimination, poverty, and racism) that are often beyond the control of individuals [18-21].

Theoretical Perspectives

Based on socio-environmental approach, this paper recognizes that individual and collective health are intertwined, such that health disparities are the outcomes of intersecting social determinants including neighborhoods, access to economic and social resources, everyday encounters of discrimination and racism, and social exclusion [22]. Integral to this paper are the concepts of masculinity and vulnerabilities. According to UNAIDS [23], people’s vulnerability to HIV depends on their personal circumstances, societal factors such as disempowering cultural practices and laws, and the extent to which they have access to appropriate services and supports. However, the UNAIDS definition of HIV vulnerability neglects the role of structural determinants, such as various forms of social oppression, deprivation, and poverty [24]. This paper measures vulnerability in terms of individual attributes such as self-esteem, personal competence, optimism, and related attributes. The focus on individual factors makes invisible those situational and socio-environmental factors (e.g. cultural safety, access to resources, social capital, intergenerational trauma) that are often beyond the control of individuals [21].

Methodology

Study Community

Windsor, located in southwestern region of Ontario, and has also been identified as has one the highest rates of immigrants proportional to its population, having the sixth largest concentration of people who have ancestral ties to Africa [25]. According to Statistics Canada (2011) [26], Windsor has the highest proportion (33.3%) of low-income population living in very low-income neighborhoods. Windsor with the fifth highest HIV diagnosis rate (5.7) among new cases is also a border town with Detroit, Michigan, USA, which has 603 positive sero-status persons per 100,000 people [27]. In addition, its low legal age for alcohol and tobacco consumption, attracts young Americans to visit Windsor bars regularly on weekends and has opened more avenues for social and sexual networking [28]. This networking is likely to create unique local issues. Therefore, it becomes crucial to conduct a study that focuses on Windsor because issues such as youth’s and parents’ socioeconomic status, inter-country migration or mobility, social hubs, and diversity may nurture cross-border politics and relations.

This study is based on the community mapping of a larger CIHR (2009-2012) funded project on “Promoting and owning empowerment and resilience among African, Caribbean and Black youth in Windsor (POWER)”. Engagement process began by organizing a public forum for ACB youth and community based organizations and stakeholders. At the public forum, we developed a list of volunteers to serve in the Youth Advisory Committee (YAC). YAC became a bridge that links the project to the study communities, target population (youth) and promoted participatory involvement of youth at all levels of the research process. We provided a brief overview of the project and particularly the community-based approach that focus on partnering with the communities and target group as significant actors in the project implementation.

Data Collection

Two investigators and three staff undertook six focused community mapping group sessions between May and November 2015 with 18-24 years ACB youth living in Windsor. The six group sessions comprised of Youth Advisory Committee (YAC) of university of Windsor students (7), St Claire College (7), Caribbean non-students (7), Black non-students (8) and African non-student (7). Purposive sampling was used to recruit a total of 43 participants. Each group session comprised of homogenous participants in terms of racial/ethnic groups and student status. Two project staff facilitated after being trained over one-week training on community mapping. Each focused group session included seven to eight participants of the same ethno-racial group organizations and student status. Two staff and one investigator facilitated the focused sessions. To begin each session, facilitators introduced the community mapping methodology, including a de-briefing on what the project purpose and goals. Facilitators used a focused semi-structured guide containing prompt questions to lead the discussions, exploring commonalities and differences across the conversation. After each session, the project team debriefed with facilitators, providing additional coaching on issues or ideas that arose during the session. Going around the table, each participant was giving the opportunity to contribute to the discussions. Participants were provided with sticky notes to put down their response if too shy to speak out. Participants had ample uninterrupted time to respond promptly. Participants as a group placed some of their answers on the map of Windsor. Each session lasted between 90 and 120 minutes. The language of communication was English. We took notes and audio taped the discussions. We served snacks and paid participants stipend of $25, which included $5 for transportation.

Data Analysis

The staff transcribed the audio recordings verbatim. Two investigators verified the transcripts for accuracy. Project coordinator created the codebook used for coding the transcripts. We used pattern coding by Miles and Huberman (1991) to summarize each transcript. Codes were compiled to record the experiences and perceptions of barriers that tend to expose ACB youth to HIV/AIDS. Staff and two investigators re-examined the coded transcripts for accuracy. And, N6 qualitative software, online coding and data management was used to organize and code the transcripts. The coding process resulted in the identification of the data supporting the emergent themes and the corresponding quotations buttressing the arguments. We made a table of emergent themes, sub-themes and corresponding quotations, which was further reviewed by staff and one investigator for validation. The team overseeing the community mapping read and re-read the themes against the quotations to identify the pattern of arguments.

Results and Discussion

Background of Participants

Table 1 shows that participants of African heritage make up the majority (51.2 percent), those of Black heritage were 23.3%, while Caribbean were 20.9% and only 4.6% classified themselves as of mixed heritage. Additionally, in terms of gender, males were 55.8% and females were 19%. All the sessions were held in a place of close proximity to the participants. For example for university of Windsor and St. Claire College, the sessions were held in the two campuses, while others tended to be held at downtown Windsor.

Table 1: Participants’ Background Characteristics.

Places to Find ACB People

The study probed for the places where ACB people commonly lived. The participants reported that ACB people commonly resided in places where there were affordable housing, with close proximity to social institutions and amenities such as schools, recreations centers. Government provided most of affordable housing tailored to income of tenants. Public maintenance of these housings was timely and at no extra cost to the tenant. More importantly, it was a common practice for newcomers to seek and identify residential places populated by ACB people. Participants identified the west, around sandwich, central and downtown areas as the places to find most ACB people, while they are sparsely located in South Wood Lake area, where the wealthy and affluent ACB families reside. More ACB people are congregated in the west end/Sandwich, central and downtown, which are crime and poverty-ridden areas. They also noted that a high population of ACB youth, as students, wage earners and those not gainfully employed resided in these areas, either alone or with parents/guardians. Participants also reported a number of social vices such as availability and accessibility to drugs like marijuana, partying, and sex work, which are common around affordable housing places. These social vices expose ACB youth to risk behavior and HIV infection.

In terms of their opinion on living in these places, there were varied ideas. In the Black Canadian mapping session, participants described these areas as: Dirty, lot of prostitutes, Rough area that used to be more violent back in (10), it’s a bad area, prostitution, people get robbed beat up all the time (13), it’s so retched, ghetto, lots of poverty, No money or jobs are here, A lot of drugs and violence.

The YAC Group Noted That

There are a lot of young people; a lot of influence, peer pressure, drugs, sports, unprotected sex, good or poor academics, some of the neighborhoods are associated with public housing, immigrant settlement, Glengarry has a waterpark, STAG, community centers, where people can go, ———————, black people are excluded from networking (union)

In the University Students’ Session, a Participant Noted

Relatively impoverished; roads and everything is poorly cared; not much of the city funds go there; a little dangerous; its more affordable; but there is always some type of altercation on my lawn or across the street; I just assumed I would find something more affordable in West Windsor; familiar; they might also feel they can find someone they can relate to (Female Caribbean).

While in the Non-student Group Session, a Participant Added

Black people are spread out in little areas; West Windsor; bad; but I think it is inclusive, culturally sensitive a good place; unkempt; drugs, boarded houses; not true; there is Windsor housing for immigrants.

Discrimination and Contact with the Police

Despite the importance of social networking with friends and peers, participants reported that the presence of ACB youth in predominantly white residential neighborhoods at out-skirts of Windsor, high-end stores, and electronic sections/units of departmental stores, grocery stores and around police stations raises suspicion. Other places identified where teen health center and blood clinic (cited by University group), and prisons (African non-students). The common reasons provided for avoiding these areas are to avoid confrontations with the police, and confrontations involving wrong identity. Participant noted that “If a conflict/confrontation occurs- automatically the Black person(s) will be confronted even though the fight was from another race” (African female session). Other youth reported that “violence and crime” are high at downtown Windsor, and ACB youth are often the first suspects.

Participants also reiterated their experiences with the police in a number of places such as residential areas around downtown, west end, university areas; clubs – Boom Boom, house parties; highways and other places such as the mall and stores. Often such encounters with peers and relatives end up as mistaken identity, or it involves highway offense and road checks. A youth noted that with police in Windsor, “they think all Blacks look alike” (African Female, AF). A participant reported that there was a time when a “girl’s house was robbed; a dozen police car were present, the last one had a gun pulled out, stopped us for an hour, asked foolish questions, and said you fit the description”.

A participant also noted an incident downtown, where ACB boys were hanging out at “McDonalds with white girls, cops harassed us, told us to go home or be arrested for loitering, and promised to call the girl’s parents.” Police officers would stop an ACB youth and say, “Are you up to something? Are you from Somalia?” (African Male) A student participant also noted: “walking home from university, 20 minutes-walk from home, 2am I was questioned about seeing someone in the area” (AM).

Where do Youth Spend their Free Time?

In response to the question, “where do youth spend their free time?” participants highlighted a number of places in west of Windsor, such as Sandwich and downtown areas where ACB youth most frequently spend their free time. These places included bars, clubs, strip shops, parks, and sport centers like St. Denis center at the University of Windsor and YMCA, house parties, malls, University library – Leddy and at the theaters. These were common meeting places where they engage in social and sexual networking with each other. Data also showed gender differences as males frequented more places for sports and clubbing, while females tended to patronize places that are less costly, for dancing and were often in company with older siblings and friends. During the walking tours of these areas, the research team and staff were informed that other ACB youth residing in other places in Windsor tended to visit and congregate in these areas to be in company of other peers and friends. We also probed for healthy and unhealthy places in Windsor. The participants reported diverse settings. The healthy places ranged from sport places like gyms at YMCA and St. Denis of the University of Windsor; leisure places like STAG, water front located at downtown Windsor; faith-based institutions-churches and mosques, NGO offices like Windsor Women Working With Immigrant Women, Women Entrepreneur Skills Training, New Canadian Center for Excellence, AIDS Committee of Windsor, Youth Connection Association, Salvation Army, and community centers like STAG, Caribbean center. For these youth, these places provided low cost services and were safe and fun places. However, they noted that unhealthy places included parks; downtown area, street allies, and places where many sex workers line the streets, and house parties. The reasons provided ranges from availability of drugs, sexual networking, and exposure to unhealthy behaviors such as sexual activities, drugs and despicable behaviors such as sexing in public places like parks. A participant in identifying what makes these places unhealthy said: Downtown; drugs and alcohol; white women approach Black men; border city; girls from Cincinnati, Pittsburgh, Detroit; 1 in 4 Americans have an STI; Black women give stink eye because it’s not healthy (sexually networking with men who have exposed themselves to “risky” White women); strip clubs; studio 4; Teasers; human and drug trafficking; leopards owns 2 houses; keep green cards in safe; European girls; you don’t know what they have; police department; racial profiling; west end (street level crime); university of Windsor; break ins and misdemeanours (Caribbean Black Male).

Where to Find Casual Sex Partners

Participants identified downtown area and facilities -bars, strip clubs, house parties, Studio 4, casino, riverside after hour, massage parlors, parking lots, university library and residences, High school, St Clair, workplaces – factories, street corners – next to Bistro, shops – sex shops (Maxine, Dougall), residential Areas – condos downtown, restaurants – McDonalds (Escorts) as places to find casual sex partners. These places have close proximity to places where ACB people reside provided easy access to “alcohol and casual sexual activity” (African Female, AF). A participant in the University community mapping session said:

You will be surprised at what goes on at this campus. A friend finds a message at Leddy “for a good time call this number” (African Male, AM).

Another participant added, “campus for variety and safety” (African Female, AF)

A participant from the university also said:

AM: bars, strip clubs; university (you would be surprised at what goes on at this campus); speaks about friend who finds a message at Leddy; “for a good time call this number; meet at a house;” (African Male, AM)

Silvers on Seminole, Casino (Caribbean Female, CF).

Secret Places for Secret Things

To the probe on the secret places where ACB visit and/or congregate to do secret things, not to be heard or known by their parents/guardians, the participants reported bars/s clubs, located in the Sandwich and downtown areas, and specifically university and college campuses where a variety of activities occurred including “alcohol and casual sexual activity” (AF), and youth solicitation for sexual activity. Other activities included drugs, illicit sex, unsafe sex, and prostitution, which are unhealthy and expose persons to STIs including HIV/AIDS. The common reason given for engaging in these activities at these places is that they are “away from home and parents and no need to keep good name”.

P4 AF: residence; houses near campus; sell drugs; Askin street near the university; friends of friends; word of mouth

P1 BM: university; residence; college life involves it; alcohol and weed; houses right by campus

P6 CF: apartments on Peter Street; people come in and out at odd hours

P5 ACF: parks; accessible for sex and drugs

P7 AM; coronation school pike park; when house party ends, can go there to be loud or drink

CBM: Riverfront (car sex); hotels on Huron church (strippers from Ottawa, nova scotia); downtown Windsor condos by police station (drugs); Wyandotte and Windermere (S and M club); massage parlours downtown; houses in west end (coke spots); south Windsor (behind Devonshire mall area; cocaine); Banwell (ecstasy).

Discussion

Community mapping sessions and walking tours provided the researchers and staff a journey into the lived experiences and observations of ACB youth in Windsor, Ontario. The common thread in these accounts and activities was the social inequality, which was more along racial lines that tended to create social exclusion, perpetuating feelings of discrimination and overt racism, which have been reported to have serious impact on ACB communities particularly youth [18,19,29,30] and their attitude to the police [31]. Although these experiences results in lack of entitlement and privilege, thus threatening the social existential survival of ACB population, particularly youth, the community mapping strategies, gave back to these youth some elements of power not just as research participants but also as researchers in the front drive of data collection, informing and making contributions to all stages in the project.

The findings that neighborhoods’ context and organization promote ACB youth vulnerability to HIV infection has been buttressed by similar findings from existing studies from the United States and Canada depicting the influence of neighborhood environment and social disorder [19,20,32] neighborhood economic disadvantage [33-35] on HIV exposure.

The study also reported that the proliferation of some neighborhoods densely populated by ACB populations with bars, street allies, abandoned houses, availability and accessibility to drugs and alcohol, perpetuate risky behaviors like drug and alcohol use, accessibility and availability of female sex workers. Of significance is the report by participants that there have been rape cases of male and female victims in such neighborhoods due to bad people hiding in abandoned properties, and coercing or luring young persons and children into such places. Similarly, a few studies [36-38] suggest that physical environment influences sexual risk and HIV vulnerability. For instance [36], study notes that characteristics of the urban environment influence a wide variety of health behaviors and disease outcomes. They contend that the physical, social and cultural characteristics of urban environment have tolerant social policies through which behaviors and identities may be enacted with less fear. Also noted that inadequately housed individuals tend to be socially isolated or involved in networks that support risky behaviors such as drug use, unstable intimate relationships, multiple sex partners, casual sex exchange and low rates of marriage [39].

The present study also found that a majority of ACB population resides in affordable housing for low to medium very income people families. According to Statistics Canada (2011) [26], Windsor as a town has the highest proportion of low-income populations living in very low-income neighborhoods. Research evidence also shows that people living in very low-income neighborhoods appear to have higher HIV risk profile than those living in higher income areas [18]. Similarly, studies from North America also bear credence to the findings by its association of poverty from social and economic deprivation with HIV risk behaviors [39,40].

Of great importance are past evidence that local bars in Windsor, which attracts youth across the border due to its lower age for alcohol consumption increases the scope of social and sexual networking among Canadian and American youth [28]. Noting that the HIV prevalence rate is very high across Windsor’s border city of Detroit (35 new cases per 100,000 residents), and coupled with the early initiation of sex in youth and the poor attitude to and low use of condoms [27,41] the networking between the two cities is likely to increase the exposure of youth to HIV infection. In addition, participants reported going to hidden places away from parents and homes to use drugs, party and indulge in sexual activity. These findings have been documented in other empirical studies showing that young boys and girls use drugs like marijuana and alcohol, which may affect their decision-making [42], and invariable lead to risky behaviors including anal sex [43-46], violence [47-51], unprotected sex [52], and having casual and/or opportunistic sex [53-58].

Finally, low parent-child communication on sex also matters. It has been well documented that there is lack of sex talks in families and particularly between parents and children [59-61]. This gap exposes younger ACB youth to risky sexual behaviors such as low condom use and ability to negotiate sex, which has been reported to have serious sexual and reproductive heath consequences like exposure to sexually transmitted infections including HIV/AIDS. However, existing studies on Caribbean population have shown parents willingness to talk about sex and related issues with children [62]. And, it has been reported that parents talk about sex with children leads to abstinence, postponement of sexual initiation, positive attitude to safe sex practices including condom use, and engagement in monogamous relationships [63-68]. Invariably, parent-child communication about sex better prepares children when faced with the decision to have or not to have sex [69]. On the contrary, other studies however reported that some parents feel talking about sex matters with their children and adolescents will introduce them into sexual activities and therefore, they avoid such conversations [64,70]. Although studies remain inconclusive on the outcomes of parent-child talk about sex matters, parental efficacy to improve effective parent-child communication about sex matters remains important [71-85].

Conclusion

For decades, many HIV prevention research focused on determining, planning and implementing interventions to address individual-level risk behaviors that expose individuals to HIV infection. This present study indicates the importance in examining the environment, social and cultural impediments influencing risky behaviors. African, Caribbean and Black youth in Windsor, specifically young men face pressure from parents and families on children to conform to the social and cultural gendered expectations that makes you a woman (practicing abstinence) and a real man, like being the provider, economically stable, having multiple sex partners, and engaging in unprotected sex, which invariably are likely to increase exposure to HIV infection. This gives credence to this study that engaged AB youth as both research participants and as researchers, through membership in the Youth Advisory Committee, and actively engaged in recruiting and participating in community mapping and walking tours. More future research need to adopt a mixed method approach, which includes community and/or concept mapping, and other qualitative methods like focus groups, in-depth interviews, photovoice, and questionnaire to study specific subgroups of ACB population like self-identified heterosexual ACB youth, men and women, on a broader scale, provincially or regionally. So doing, we will then be able to establish the differences and similarities across space, neighborhood, race/ethnic subgroups, religion, class and gender in the general population.

The mapping and construction of factors in the environment, neighborhoods, social and cultural contexts among ACB boys, men, girls and women would gain immensely from further investigations. Such interests may provide broader-based data on perceptions of HIV vulnerability, environment and neighborhood factors, with issues of masculinity, specifically perceptions of black masculinity and sexuality that affect sexual scripts, what having sex means, condom use decision making, opportunistic sex, and perceptions of HIV testing.

Furthermore, the findings from this study can begin to inform HIV prevention strategies among ACB youth on how best to increase HIV prevention services. Such programs will focus efforts on addressing multi-level factors by adopting multidimensional, effective and sustainable interventions, which address individual, social, cultural and environmental risky behaviors, like unsafe sexual practices (having multiple sex partners, lack of effective condom use), while also addressing and implementing policies and interventions to improve the environment, neighborhoods, and socio-cultural factors like perceptions of a real black man that hamper the delivery of HIV services aimed at buttressing the sexual and reproductive health of ACB population, specifically youth.

Acknowledgements

Canadian Institutes of Health Research (CIHR) provided the funding. The ACBY team includes Kenny Gbadebo, Youth Connection Association; Eleanor Maticka-Tyndale, University of Windsor; Valerie Pierre-Pierre, African Caribbean Council of HIV in Ontario; Robb Travers, Wilfrid Laurier University; Jelani Kerr, University of Louisville, Louisville, KY. Thanks to the study participants for their contribution. The content is solely the responsibility of the author.

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Abstract

Women in the United States criminal legal (CL) system are at the nexus of several drivers of the COVID-19 pandemic, including incarceration, poverty, chronic illness and racism. There are 1.25 million women incarcerated or on community supervision (probation or parole) in the U.S. We present findings regarding the impact of COVID-19 on women in the CL system (N=344) during the early days of the pandemic. Participants were drawn from community settings in an ongoing study of cervical cancer risk in three U.S. cities: Birmingham, Alabama, Oakland, California and Kansas City, which straddles the states of Kansas and Missouri. Regional differences were found in COVID-19 testing and perceived susceptibility to the virus, but not in COVID-related disruptions to health care. We found differences by race/ethnicity in trusted sources of information about COVID. Black women had higher odds of choosing TV as their most trusted source of information, while White women were more likely to cite government or social service agencies as their most trusted source. Notably, 15% of women said they did not trust any source of information regarding COVID-19. COVID-19 disproportionately impacts populations with high levels of mistrust towards medical and government institutions, a result of the twin legacies of medical mistreatment and structural racism. Our findings underscore the need for innovative strategies to reach these groups with accurate and timely information.

Keywords

Health communication, COVID-19, Criminal justice, Racial disparities, Trust, Women

Introduction

As of 2017, there were 1.25 million women under control of the criminal legal (CL) system in the United States, including over 225,000 women in jails or prisons [1,2] and over a million women under community supervision (probation or parole) [3]. Women involved in the CL system live at the nexus of several drivers of the U.S. COVID-19 pandemic, including incarceration, poverty, chronic illness and racism [4]. They are predominantly low-income and disproportionately women of color [5]. They have markedly higher rates of underlying chronic health conditions, associated with poor COVID-19 outcomes, than women in the general population [6,7]. In addition, hundreds of thousands of women transition between community and carceral settings each year [8], and prisons and jails continue to be revealed as hotbeds of COVID-19 transmission [9]. Thus, COVID-19 is very much a pertinent risk for women who are involved in the CL system in the U.S [10].

In the U.S., the story of COVID-19 is one of distinct and marked racial/ethnic disparities, with Black and Hispanic/Latinx people afflicted by disproportionately high rates of infection [11-13] and death [14,15], In addition, the socioeconomic consequences of COVID-19, such as loss of employment and eviction from housing, disproportionately affect people of color [16,17] People of color are also overrepresented among those employed in jobs with high risk of exposure, such as home health aides, cashiers and meat packing workers [18]. Another central theme of the pandemic in the U.S. is the lack of a coordinated national response, leading to different policies and public health mandates in different regions of the country. The lack of a single authoritative source of guidance contributes to confusion and people relying on widely divergent sources of information about the virus. With this backdrop, we sought to understand how women with CL involvement were affected by COVID-19 early in the pandemic. Specifically, we examined how COVID-19 had affected their health care and what sources of information about the virus they relied on. The purpose was to determine whether there were regional or racial/ethnic differences in these outcomes, to help inform health care and communication efforts.

Materials and Methods

Research participants were enrolled in an ongoing, three-city study of cervical cancer risk among women involved in the CL system, funded by the National Cancer Institute (R01CA226838). Data are collected annually with a cohort of women in community settings in three U.S. cities: Kansas City (Midwest), Birmingham (South) and Oakland (West). In response to anecdotal evidence about challenges and disruptions created by the pandemic in the study population, we conducted a brief supplemental survey (5-10 mins) over eight weeks from mid-April to mid-June 2020. Interviews were conducted by telephone rather than in person due to shelter-in-place orders. Participants received a $20 incentive for responding to the survey. Regular check-ins with participants was a routine part of the research protocol and was approved in accordance with the National Institutes of Health single institutional review board policy for multisite research.

Measures

The primary independent variables were race/ethnicity and study site (city). Participants were asked “How do you identify in terms of your race or ethnicity (select all that apply)?” and read a list of several different racial/ethnic groups. We used responses to create a three-level nominal categorical variable race variable. A majority of participants endorsed one race, predominantly Black or White. Small numbers of women reported more than one race (n=10), Latinx only (n=17), American Indian or Alaska Native (n=1), or Asian or Pacific Islander (n=4). We combined these women into a single category as “Other People of Color (POC).” While useful for analytic purposes, we do not draw conclusions about this group in our findings, as we would be generalizing from numerous racial/ethnic backgrounds. Site was determined by the city in which interviews were conducted. To assess health care utilization, participants were asked “Has a health care provider canceled or postponed any regular appointments due coronavirus?” and “Have any of your health care appointments been conducted by phone or video (Telemedicine) instead of in person, due to the coronavirus?” which were both coded yes vs. no. Perceived susceptibility to COVID-19 was assessed with an item which asked, “On a scale of 1-10, how likely do you think you are to get the coronavirus, with 1 being not at all likely and 10 being certain to get it?” Dependent variables related to sources of information about COVID-19. Participants were asked, “What are your sources of information about COVID-19? (select all that apply)” and read a list of potential sources. Each source was dichotomized yes vs. no. To determine most trusted source of information, participants were asked a follow-up question, “Which single source do you trust the most?” Rather than use a multi-level variable, we dichotomized these responses (most trusted y/n) for a more precise examination of associations.

Data Analysis

Descriptive statistics were conducted for all study variables. Logistic regressions were used to determine the unadjusted odds ratios (ORs) and 95% confidence intervals (CIs) for the associations between outcomes and race. Adjusted ORs and 95% CIs for the associations between outcomes and race were examined controlling for study site, age, and other relevant factors (depending on the model). Analyses were run in STATA Version 16.1 (Stata Corp., College Station, TX, USA).

Results

We successfully reached 73% of the study cohort by telephone during the data collection period, for a sample of 344 women (Table 1). Race/ethnicity varied by site, with more White women in Kansas City and Birmingham. Mean age also varied by site, with a mean of 39 years in Kansas City, 40 in Birmingham and 46 in Oakland. All women had histories of criminal legal involvement, most having experienced both incarceration and community supervision (probation or parole). Women in Oakland were more likely to have health insurance, a result of California expanding Medicaid coverage under the Affordable Care Act in 2014. Despite this, three-quarters of all women had attended at least one health care visit by appointment in the past year. In addition, over half had sought care at a hospital Emergency Department (Table 1).

Table 1: Participant characteristics and health care by racial group.

Health Care Since COVID-19

Nearly half of women reported having medical appointments postponed or cancelled due to the COVID outbreak. However, many women also reported receiving health care by telemedicine (Table 2). The odd of having an appointment cancelled or postponed was significantly higher among Black women, after controlling for location, age and health insurance (Table 3). However, Black women also had higher odds of having a telemedicine appointment as a consequence of the outbreak. We found no differences by geographical region in COVID-related impacts on scheduled health care, once we controlled for race, age and health insurance (data not shown). Sixty (17%) of the women had been tested for COVID over the data collection period (April-June 2020), a timeframe in which testing resources were scarce. Two women reported a positive result. Testing was more common in Oakland, where 23% of women were tested, compared to 13% in Kansas City and 11% in Birmingham (p=0.027). Perceived susceptibility to COVID-19 was low overall: on a scale of 1 (not at all likely) to 10 (extremely likely), the mean score was 3.7 [SD 2.8]. Women in Oakland rated their susceptibility slighter higher (4.1) than women in Kansas City (3.2) or Birmingham (3.6) (p=0.041). There were no significant racial/ethnic differences in perceived susceptibility (data not shown).

Table 2: Most trusted source of information about COVID-19 by racial/ethnic group.

Table 3: Logistic regression of COVID-19 related health care experiences by race/ethnicity.

*Adjusted for study site, insurance status and had 1> medical appointment past year.

**Adjusted for study site, age and insurance status.

Sources of Information about COVID-19

Most women reported multiple sources of information about COVID-19, with a mean of 2.4 [SD 1.1]. Television news was the most frequently cited source of information regarding COVID-19 (83%), followed by social media/websites (61%) and friends/family (43%). Other sources of information included government or social service agencies (21%), medical providers (19%) and radio (6%). When asked to identify their single most trusted source of information, over half of women chose television news (Table 2). While many women endorsed friends and family as a source of information, very few (5%) cited them as their most trusted source. Similarly, a relatively small proportion of women (13%) said medical providers were their most trusted source of information about COVID-19. Black women had higher odds of choosing TV as the most trusted source than the other groups of women, after controlling for age and study site (Table 4). White women had higher odds of citing government or social service agencies as their most trusted source of information (Table 4). It is noteworthy that fifteen percent of women said they did not trust any source of information about COVID-19. This was higher among Black women but did not reach statistical significance in regression controlling for age and site. We found no significant regional differences in information sources or most trusted sources once controlling for race and age in regression analysis (data not shown).

Table 4: Logistic regression models of most trusted source of COVID-19 information by race/ethnicity.

*Adjusted for study site and age.

Discussion

Our examination of health care-related effects of COVID-19 among women with CL involvement found mixed results. While over 40% of women reported having health care appointments cancelled or postponed due to COVID-19, a roughly equal proportion received care by telemedicine, and there were no differences by region. This is consistent with a rapid uptick in telehealth visits for publicly insured people in urban areas throughout the U.S. in April-June 2020 [19]. The higher prevalence of COVID-19 testing in Oakland is likely a reflection of the more aggressive stance California took towards controlling infection, compared to the Midwest (Kansas/Missouri) and Southern (Alabama) states. Given this higher level of activity to address the pandemic, it is not surprising that the mean level of perceived susceptibility to COVID-19 was also higher among women Oakland, CA. Our findings regarding trusted sources of COVID-19 information did not vary by region; however, they revealed some interesting variations by race/ethnicity. Black women were significantly less likely than White women to choose government institutions or social services agencies as their most trusted source of information about the virus. In addition, very few Black women identified health care providers as their most trusted source. The long history of racism in government and criminal justice policies in the United States likely contributes to this mistrust [20,21], as does the legacy of unequal treatment and abuse in U.S. medicine [20,22] Restorative work with communities of color is needed to address medical mistrust [23,24], particularly if a future vaccine is to be widely accepted among vulnerable groups [25]. Finally, it is striking that a notable proportion of women (15%) said they didn’t trust ANY source of information regarding COVID-19. This suggests an urgent need to investigate and implement innovative, non-traditional avenues for delivering public health information.

There are several substantial limitations to this study. While data were collected from women in different regions of the United States, the sample is not nationally representative of women involved in the CL system. Due to the exigencies of conducting data collection rapidly in the context of shelter-in-place orders, we were only able to reach three-quarters of women in the parent study. It is possible those we were unable to reach were having different experiences; for example, it is possible that some were hospitalized with the virus. The potential of socially desirable response choices is always present with self-report data, although our questions didn’t focus on typically stigmatized behaviors.

The COVID-19 pandemic has brought into sharp relief the underlying social drivers of poor health in the U.S., including racism, poverty and incarceration. In addition to affecting their health, these conditions affect the level of trust individuals put in social, medical and public health institutions. A U.S. national poll conducted in August 2020 found that, if a COVID-19 vaccine were made available, 45% of Black and 44% of Hispanic/Latinx people would not choose to be vaccinated, compared to 30% of Whites [26]. The need for accurate, trusted health communication to address this public health crisis is clear. It is incumbent on public health professionals to identify new, innovative avenues for public health messaging to vulnerable groups, and to improve the perceived trustworthiness of more traditional sources of information.

Acknowledgements

This research was supported by the U.S. National Cancer Institute (grant #R01CA226838) and the U.S. National Institute of Minority Health and Health Disparities (grant #R01MD010439). The authors thank the women who shared their experiences for the study, despite the disruption and uncertainty created by the COVID-19 pandemic.

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Severe scoliotic deformity of the thoracolumbar spine imposes a significant anesthesia challenge for non-spine surgery. Patients with severe scoliosis are at increased risk for perioperative morbidity and mortality due to underlying pulmonary and cardiac dysfunctions [1-3]. Stress, pain, mechanical ventilation, and surgery-induced inflammation can further increase the risk of postoperative cardiopulmonary failure. We present a preoperative chest radiograph demonstrating extensive thoracolumbar scoliosis with Harrington rods implant, anatomic distortion, and bony dysmorphism (Panel A, white arrow). The patient underwent a living donor kidney transplant under general anesthesia. Preoperative anesthesia and surgical planning is crucial and should focus on airway difficulty, ventilation management, positioning, new kidney location, and postoperative pain management.

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Ultrasound-guided quadratus lumborum was difficult in this patient due to atrophy of trunk muscles, chronic scarring, and artifacts from the implant, which required careful assessment of anatomical landmarks to perform a successful nerve block.

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