Limited accessibility to HIV services for persons with disabilities living with HIV in Ghana, Uganda and Zambia

Abstract

IntroductionKnowledge about experiences in accessing HIV services among persons with disabilities who are living with HIV in sub-Saharan Africa is limited. Although HIV transmission among persons with disabilities in Africa is increasingly acknowledged, there is a need to bring to life the experiences and voices from persons with disabilities living with HIV to raise awareness of programme implementers and policy makers about their barriers in accessing HIV services. This paper explores how the barriers faced by persons with disabilities living with HIV impede their ability to access HIV-related services and manage their disease.MethodsWe conducted focus group discussions with 76 persons (41 females; 35 males) with physical, visual and/or hearing impairments who were living with HIV in Ghana, Uganda and Zambia (2012–2013). We explored challenges and facilitators at different levels (individual, psychosocial and structural) of access to HIV services. Transcripts were analyzed using a framework analysis approach.ResultsPersons with disabilities living with HIV encountered a wide variety of challenges in accessing HIV services. Delays in testing for HIV were common, with most waiting until they were sick to be tested. Reasons for delayed testing included challenges in getting to the health facilities, lack of information about HIV and testing, and HIV- and disability-related stigma. Barriers to HIV-related services, including care and treatment, at health facilities included lack of disability-friendly educational materials and sign interpreters, stigmatizing treatment by providers and other patients, lack of skills to provide tailored services to persons with disabilities living with HIV and physically inaccessible infrastructure, all of which make it extremely difficult for persons with disabilities to initiate and adhere to HIV treatment. Accessibility challenges were greater for women than men due to gender-related roles. Challenges were similar across the three countries. Favourable experiences in accessing HIV services were reported in Uganda and Zambia, where disability-tailored services were offered by non-governmental organizations and government facilities (Uganda only).ConclusionsPersons with disabilities living with HIV encounter many challenges in accessing HIV testing and continued care and treatment services. Changes are needed at every level to ensure accessibility of HIV services for persons with disabilities.

Young women with disabilities and access to HIV/AIDS interventions in Uganda

“…12 They are also more likely to report having a sexually transmitted disease than those without a disability 13 and are also at increased risk of exposure to HIV. For young women with disabilities, this elevated risk is compounded by additional risks associated with gender and age, making them particularly susceptible to HIV infection.…”

“…11 Furthermore, health facilities' architectural planning does not factor in people with disabilities, making physical access into such facilities challenging. In a qualitative study conducted by Tun and colleagues, 12 one of the most significant barriers to accessing facility-based HIV services and receiving test results by persons with disabilities in Uganda was related to physical accessibility. 13 For instance, most health centres in Uganda lack ramps and have narrow doorways that hinder the use of movement devices, such as wheelchairs.…”

“…10 Although no such data exist in Uganda, research in Zambia documented persons with disabilities living with HIV being denied HIV testing services due to health workers' communication constraints. 12 Girls and women with disabilities generally live in remote rural areas with limited or poor access to education and health services, and what is available is of relatively lower quality than that offered in more urban areas. In addition, the Ugandan sexual health framework does not take into account the special needs of people and in particular women with disabilities.…”

Lessons learned and study results from HIVCore: an HIV implementation science initiative

“…Tun et al . describe how persons with disabilities in Ghana, Uganda and Zambia face many barriers to accessing services that make it very difficult for them to get tested for HIV and, if found positive, many persons with disabilities are unlikely to initiate treatment and be retained in care and treatment due to a myriad of challenges, including stigma related to both HIV and disabilities, physically inaccessible facilities, lack of accessible information, such as in Braille or sign interpreters, lack of trained staff to provide services for persons with disabilities, economic hardships and those who are illiterate [21]. …”

“…As an outcome of the engagement of local stakeholders in Ghana in the study on persons with disabilities [21], the Ghana AIDS Commission announced that the new National Strategic Plan (NSP) would be revised to better address the needs of persons with disabilities, as prior to this study Ghana's NSP did not include disability as a challenge in HIV programming, and that disability-accessible educational materials will be developed. Upon completion of the first studies in the initiative, HIVCore convened an international writing workshop to enable sharing of experiences in data analysis and to highlight policy and programmatic implications of study findings.…”