HEAR HER - MYTH VS REALITY
AN EVIDENCE-TO-ACTION GUIDE
Interactive Evidence-to-Action Guide developed by the Stellaheart of Passion Foundation to challenge common misconceptions about disability inclusion in HIV services.
Evidence on disability-inclusive HIV services is evenly distributed across the HIV care continuum.
Research helps us understand where HIV services are working well and where improvements are needed. However, the available evidence is concentrated in some areas of the HIV care continuum, while other stages have received little or no research attention.
What did the evidence show?Most studies focused on HIV prevention, education, and information access. Very few studies examined HIV testing, treatment, or ART adherence. No eligible studies investigated retention in care, viral suppression, HIV self-testing, PrEP, differentiated service delivery, or prevention of mother-to-child transmission (PMTCT).
Disability inclusion must extend beyond HIV prevention to the entire HIV care continuum.
Disability-inclusive HIV services should support people throughout the entire continuum of care from prevention and HIV testing to treatment, long-term care, and viral suppression.
What did the evidence show?Most research focused on HIV prevention and education. HIV testing, treatment, ART adherence, and viral suppression received much less attention.
Having an HIV policy automatically leads to disability-inclusive services.
Having a policy is an important first step, but it does not guarantee that HIV services are inclusive in practice. Implementation depends on training, resources, and accountability.
What did the evidence show?Studies identified weak implementation, inadequate funding, limited healthcare worker training, and insufficient disability-responsive programming.
Without disability-disaggregated data, inequalities in HIV services may go unnoticed.
To improve equity, health systems need to know who is being reached. Collecting data helps identify disparities in access, service use, and outcomes.
What did the evidence show?Few studies reported disability-disaggregated outcomes. No Nigerian study has examined indicators like treatment initiation or viral suppression specifically for persons with disabilities.
Communication accessibility is just one small part of disability inclusion.
Communication is fundamental. Without accessible formats, persons with disabilities face barriers to understanding info, making decisions, and accessing care.
What did the evidence show?Studies found lower HIV knowledge and exclusion from mainstream channels. Sign language support was identified as a key facilitator.
Most barriers originate within health systems rather than from disability itself.
Inaccessible communication, stigma, and inadequate training prevent equitable access. These are structural issues, not inherent to the individual's disability.
What did the evidence show?Common barriers included stigma, transportation challenges, and weak policy implementation. Facilitators include provider training and inclusive service models.
When HIV services are designed for everyone, they automatically meet the needs of women and girls with disabilities.
Designing HIV services for the general population does not automatically ensure that they are accessible or inclusive for everyone. Women and girls with disabilities may require accessible communication, reasonable accommodations, disability-responsive services, and equitable opportunities to benefit from HIV programmes.
What did the evidence show?Disability inclusion cannot be assumed simply because HIV services are intended for the general population. The review identified important gaps in how disability inclusion has been investigated across different populations and stages of HIV care. These evidence gaps reinforce the importance of intentionally designing HIV programmes that recognise diverse needs rather than assuming one approach fits everyone.
The burden of inclusion should never fall on women and girls with disabilities, it should be built into HIV services.
Disability inclusion is a shared responsibility of health systems, policymakers, programme managers, and healthcare providers. Women and girls with disabilities should not have to advocate for basic access to HIV services, they should be able to expect it.
What did the evidence show?The review found that disability inclusion depends on health-system adaptations rather than individual effort. Achieving disability-inclusive HIV services requires coordinated action across communication, service delivery, policy, implementation, and monitoring. The evidence highlights the importance of embedding disability inclusion into the design and delivery of HIV programmes, not treating it as an optional add-on.
Current evidence is sufficient to guide disability-inclusive HIV programmes.
Evidence informs decision-making. When important areas remain under-researched, it becomes difficult to design, implement, and evaluate HIV services that are fully responsive to the needs of persons with disabilities.
What did the evidence show?Important evidence gaps were identified across HIV testing, treatment, long-term care, implementation, and monitoring. Several disability groups and geographic regions remain underrepresented in the literature. These gaps limit the evidence available to support disability-inclusive HIV programming.
KEY TAKEAWAYS
Disability inclusion is not a single service, it is a commitment across the entire HIV journey.
Policies create opportunities for inclusion, but implementation creates impact.
What gets measured gets noticed and what gets noticed can be improved.
Accessible communication is not an added feature, it is the foundation of inclusive HIV services.
Inclusive HIV services are created by removing barriers within health systems not by expecting people with disabilities to overcome them alone.
Building inclusive HIV services begins with building evidence across every stage of the HIV care continuum.
Inclusive HIV services are intentionally designed to meet diverse needs, they do not become inclusive by default.
True inclusion is achieved when HIV services are designed to include everyone from the start, not when people are expected to adapt to inaccessible systems.
Evidence gaps today can become service gaps tomorrow.
BEYOND THE EVIDENCE
This Evidence-to-Action Guide is based on findings from our Evidence Gap Review: Disability Inclusivity in HIV Prevention, Testing, Treatment, and Care Services in Nigeria: An Evidence Gap Review : https://www.preprints.org/manuscript/202606.1841
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