In a 27-country study of women receiving HIV services, the most commonly reported barrier to care was community stigma regarding HIV and AIDS.1 More than three quarters of women said that such stigma was a barrier to obtaining care, and more than half of women in Latin America and China said that it was a major impediment. Other important barriers included poor community knowledge of HIV, an unsupportive work environment, lack of employment opportunities and inadequate personal financial resources, each of which was reported by 65–72% of respondents. On average, women in the global sample had experienced 6.2 of the 12 barriers assessed in the study, though women in China had experienced 10.9.
Although a variety of studies have identified barriers to HIV care, these studies have been small and geographically limited. To obtain a broader picture of the prevalence and severity of these barriers, Johnson and colleagues conducted a cross-sectional epidemiological study in 27 countries in 2012–2013. Women were recruited sequentially during routine visits at 114 sites where HIV care was provided, including 17 sites in six Latin American countries (Argentina, Brazil, Chile, Colombia, Mexico and Venezuela) and three sites in China; the remaining sites were in Europe and Canada. Women were eligible to participate if they were 18 or older and had received a positive HIV diagnosis at least three months earlier. Participants completed four questionnaires, including the Barriers to Care Scale, which asks respondents to rate the severity of 12 potential barriers in four categories: geography and distance; medical and psychological services; community stigma; and personal resources. Using a scale from 1 (no problem at all) to 4 (major problem), respondents indicated the extent to which each barrier made it difficult for them to obtain care or services. In addition to calculating descriptive statistics on the prevalence and severity of barriers, the researchers conducted a multivariate analysis to identify women’s characteristics associated with barrier severity.
Overall, more than three-fourths of the eligible women agreed to participate, which yielded a sample of 1,931 women, including 519 from Latin America and 120 from China. On average, women in the global sample were 40 years old; 58% had received their HIV diagnosis at least five years earlier, and 40% were married. Slightly more than half of the participants were living with a partner, 46% of whom were HIV-positive. The vast majority of women (92%) were receiving antiretroviral therapy. Substantial regional variation was apparent for some characteristics, however: For example, 81% of Chinese women were married, compared with only 33% of women in Latin America, and 76% of Chinese women had been infected within the five years before interview, compared with 40% of their Latin American counterparts.
The most commonly reported barrier to care was community stigma against HIV and AIDS, cited by 78% of women globally; more than half of women in Latin America and China said that such stigma was severe, compared with slightly more than a third of those in Central and Eastern Europe. Other barriers frequently reported by the global sample were poor community HIV knowledge (72%), lack of employment opportunities (70%), lack of a supportive work environment (69%) and inadequate personal financial resources (65%). For all of these barriers, as well as for the remaining barriers in the survey, prevalence was highest in China.
On average, women in China reported that 10.9 of the 12 barriers had been problematic to some degree, compared with 6.2 in the global sample and 6.1 in Latin America. Barrier severity was also highest in China: The average severity rating was 2.8 on the scale from 1 to 4, compared with 2.1 globally and 2.2 in Latin America. Mean severity ratings were particularly high for barriers related to community stigma, both in the full sample (2.8) and in China and Latin America (3.1 each). In Latin America, the severity ratings for barriers related to distance and geography and to medical and psychological services were similar to those in Europe and Canada (<2.0); again, severity ratings were highest in China (2.4–2.9). Overall, mean severity ratings were 3.0 or higher for six barriers in China and two barriers in Latin America, but for none of the barriers in developed countries.
In multivariate analyses, the strongest predictors of barrier severity scores were residence in China (vs. Western Europe or Canada), having three or more comorbidities (vs. none), having to pay out of pocket for the full cost of HIV services (as opposed to having expenses fully covered by public or private insurance) and having changed treatment facilities in the past year. Severity was also elevated among women who were younger than 50, were unemployed or smoked, or who had missed scheduled appointments, lacked access to contraceptives or had access to routine HPV testing.
The authors note several limitations of the study, including the omission of women who were not receiving services (for whom barriers likely are especially severe), the relatively small sample from China and the lack of data from Africa (where HIV prevalence is highest). Nonetheless, the results suggest that community barriers, especially stigma, are especially important barriers and may lead to “missed appointments or reluctance to access…needed health-care services” other than primary care. Overall, the authors conclude that their findings “reinforce the need to continue efforts to educate the general community and healthcare providers on HIV to lessen stigma, increase disclosure, and decrease worldwide incidence of HIV.”—P. Doskoch
1. Johnson M et al., Barriers to access to care reported by women living with HIV across 27 countries, AIDS Care, 2015, 27(10):1220–1230.