Much lower HIV knowledge and access to testing for people with disabilities globally

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A survey of over half a million people in low- and middle-income countries found that men and women with disabilities were 25% less likely to have comprehensive knowledge about HIV prevention compared to people without disabilities. They were also less likely to know a place to be tested for HIV. Additionally, women with disabilities were less likely to know how to prevent vertical transmission and to have ever been tested for HIV compared to women without disabilities.

In Samoa, none of the sampled women with disabilities had comprehensive knowledge of HIV prevention. In Ghana, men with disabilities were 54% less likely to be knowledgeable about HIV prevention than those without disabilities. In Kyrgyzstan and Sierra Leone, women with disabilities were around 40% less likely to know about vertical transmission than women without disabilities.

The analysis focused on 37 countries with available HIV and disability data for women and a subset of 29 countries that provided data for men. There were 12 countries in sub-Saharan Africa, 7 in East and Central Asia, 6 in Latin and Central America, 6 in East Asia and the Pacific, 4 in the Middle East and North Africa, and 2 in South Asia.

Background

Globally, there are 1.3 billion people with disabilities. There is a close relationship between HIV and disability, as people with disabilities are at a higher risk of contracting HIV due to exclusion and discrimination. Efforts to increase access to HIV prevention, testing, and treatment have often overlooked the needs of people with disabilities and those living with HIV who develop disabling conditions.

Glossary

vertical transmission

Transmission of an infection from mother-to-baby, during pregnancy, childbirth, or breastfeeding.

 

middle income countries

The World Bank classifies countries according to their income: low, lower-middle, upper-middle and high. There are around 50 lower-middle income countries (mostly in Africa and Asia) and around 60 upper-middle income countries (in Africa, Eastern Europe, Asia, Latin America and the Caribbean).

low income countries

The World Bank classifies countries according to their income: low, lower-middle, upper-middle and high. While the majority of the approximately 30 countries that are ranked as low income are in sub-Saharan Africa, many African countries including Kenya, Nigeria, South Africa and Zambia are in the middle-income brackets. 

mother-to-child transmission (MTCT)

Transmission of HIV from a mother to her unborn child in the womb or during birth, or to infants via breast milk. Also known as vertical transmission.

transmission cluster

By comparing the genetic sequence of the virus in different individuals, scientists can identify viruses that are closely related. A transmission cluster is a group of people who have similar strains of the virus, which suggests (but does not prove) HIV transmission between those individuals.

Therefore, researchers from the London School of Hygiene and Tropical Medicine compared evidence on HIV knowledge and access to testing between people with disabilities and those without disabilities among adults aged 15-49. They used data from the Multiple Indicator Cluster Surveys conducted in 37 low- and middle-income countries.

Multiple Indicator Cluster Surveys use a multi-stage sampling approach to select clusters of households from a previous national sample frame (such as a census) to generate nationally representative data on indicators for tracking Sustainable Development Goals, health and development.

The study included 513,252 participants from 37 countries, with 5% (24,695 individuals) having disabilities. Most participants were female (80%), and 60% were from rural areas. All men and women aged 18-49 were eligible, while participants aged 15-17 were selected if they were among the children aged 5-17 randomly chosen from the household roster.

For adults, disability was defined as those who answered that they "cannot do at all" or had "a lot of difficulty" in activities such as seeing, hearing, walking, concentrating, self-care, and communication. For 15-17-year-olds, the list of activities also included making friends, accepting change, learning, and anxiety.

The researchers compared the following indicators among those with and without disabilities: comprehensive knowledge about HIV prevention, awareness of where to get tested for HIV, knowledge of mother-to-child transmission, having ever been tested for HIV and knowing the results, and having been tested in the last year.

Comprehensive knowledge about HIV prevention was defined as knowing the two primary methods of HIV prevention (having only one monogamous, HIV-negative partner and using condoms every time), understanding that a healthy-looking person can be HIV positive, and rejecting the two most common country-specific misconceptions about HIV transmission.

Results

  • Comprehensive knowledge about HIV prevention: Both women and men with disabilities had significantly lower knowledge about HIV prevention than women and men without disabilities (adjusted Risk Ratio(aRR): 0.75, 95% Confidence Interval (C.I).: 0.69, 0.93) and (aRR: 0.74, 95% C.I.: 0.67, 0.81), respectively. This difference was most pronounced in Ghana (aRR: 0.46, 95% C.I.: 0.27, 0.78) and Chad (aRR: 0.53, 95% C.I.: 0.33, 0.84).
  • Knowledge of mother-to-child transmission: Women with disabilities were less likely to have knowledge of vertical transmission than women without disabilities (aRR: 0.87, 95% C.I.: 0.81, 0.93). Countries with pronounced differences include Palestine (aRR: 0.39, 95% C.I.: 0.21, 0.72), Kyrgyzstan (aRR: 0.60, 95% C.I.: 0.44, 0.82) and Sierra Leone (aRR: 0.59, 95% C.I.: 0.46, 0.77).
  • Awareness of where to be tested for HIV: Women and men with disabilities were less likely to know where to be tested for HIV than people without disabilities (aRR: 0.94, 95% C.I.: 0.92, 0.97) and (aRR: 0.95, 95% C.I.: 0.92, 0.99), respectively. This difference was most substantial in Turkmenistan (aRR: 0.59, 95% C.I.: 0.42, 0.82).
  • People who had ever been tested for HIV and knew the results: Women with disabilities were less likely to have been tested than women without disabilities (aRR: 0.90, 95% C.I.: 0.85, 0.94). This difference was most pronounced in Guinea-Bissau (aRR: 0.62, 95% C.I.: 0.49, 0.79). Among men, most countries showed no difference between men with and without disabilities in testing rates, except in Fiji (aRR: 0.20, 95% C.I.: 0.06, 0.65) and Georgia (aRR: 0.57, 95% C.I.: 0.34, 0.95).
  • People who had been tested for HIV in the past 12 months and knew the results: Women with disabilities were less likely to have been recently tested for HIV compared to women without disabilities (aRR: 0.95, 95% CI: 0.90-1.02). There was no disparity for men with and without disabilities (aRR: 1.02, 95% CI: 0.87-1.20).

Although men and women with disabilities had lower overall HIV knowledge and lower testing rates, there were countries where people with disabilities surpassed their counterparts without disabilities.

  • In Tuvalu, women with disabilities had more knowledge about HIV prevention than women without disabilities (aRR: 1.62, 95% CI: 1.05-2.49).
  • In Madagascar, women with disabilities were more likely to have knowledge of vertical transmission (aRR: 1.31, 95% CI: 1.16-1.47).
  • In Tunisia, women with disabilities were more likely to have ever been tested for HIV (aRR: 1.57, 95% CI: 1.07-2.26). Men with disabilities were also more likely to have ever been tested than men without disabilities (aRR: 2.81, 95% CI: 1.17-6.72).
  • In both Suriname and Togo, men with disabilities were more likely to have been tested in the past 12 months compared to men without disabilities (aRR: 1.74, 95% CI: 1.28-2.36) and (aRR: 1.59, 95% CI: 1.02-2.47), respectively.

"Efforts should focus on improving the accessibility of sexuality education and HIV services for people with disabilities through ensuring physical and communication access of the facility and information material,” the researchers write. “Training health workers about disability (including destigmatizing disability and sexual activity) and ensuring public health and patient information about HIV are available in accessible formats can further improve the quality of these services.”

“Finally, there needs to have more comparable data on disability within routine HIV surveys as well as other national and household surveys that look at HIV prevalence, knowledge and testing,” they conclude.

References

Rotenberg S. et al. HIV knowledge and access to testing for people with and without disabilities in low- and middle-income countries: evidence from 37 Multiple Indicator Cluster Surveys. Journal of the International AIDS Society 27: e26239, 2024 (open access).

https://doi.org/10.1002/jia2.26239