Introduction

There is a tribe of Ugandans … whose issues and needs have not been given their due and appropriate attention in the fight. By all indications, persons with disabilities have been forgotten, consciously and unconsciously. They represent “the forgotten tribe”. (Mwesigwa Martin Babu) [1] (p.30)

Uganda has witnessed widespread HIV/AIDS for a quarter of a century [2]. However, while continuing to experience high rates of HIV infection, AIDS mortality, and children orphaned by AIDS, Uganda is regarded as a success story, effectively reducing HIV prevalence from 18% in 1992 to 6% by 2004 [2]. A strengthened HIV response in 2014 resulted in an increase in uptake of HIV prevention, treatment and care services, resulting in continued reduction of the number of new HIV infections and AIDS related deaths [3]. However, the number of persons living with HIV in Uganda continues to increase, due to the on-going spread of HIV, and increased longevity of persons living with HIV [3]. In Uganda, the number of people living with HIV in 2015 was estimated by UNAIDS to be approximately 1,500,000; the prevalence of adults aged between 15 and 49 was approximately 7.1% [4].

HIV/AIDS and disability are closely interwoven [5,6]. Disability, defined by the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) [7] as resulting “from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation”, is often experienced as both a risk factor for and consequence of HIV/AIDS. The United Nations advises that persons with disabilities are at increased risk of exposure to HIV; furthermore, persons with HIV/AIDS are at risk of developing a disability on a permanent or episodic basis as a consequence of their condition [8]. For example, persons with disabilities are frequently excluded from HIV education, prevention and support services due to misconceptions that they are not sexually active or do not partake in risk behaviours including drug use; healthcare services may be physically inaccessible, lack sign language facilities and other information formats such as Braille, audio or plain language; and when access to medication is limited, persons with disabilities may be treated as low priority for services [8]. Research suggests that persons with disabilities experience a lack of information about HIV/AIDS [2,9,10]. At present, however, relatively little is known about the association between disability and HIV/AIDS, and only limited prevalence data is available for populations with disabilities in sub-Saharan Africa [5,9,11–20].

Accordingly, there is an urgent need for research on disability and HIV/AIDS [12,14,21]. As advocated by Mitra [18], a disability data revolution is needed to enable disability-inclusive development by including disability in data collection and monitoring mechanisms in international development and global health. Data collection is crucial to disability-related planning and programming. As Hanass-Hancock et al. [22] have argued, a dearth of research on disability may be a significant contributor to the present invisibility of disability in national HIV and AIDS programmes. Further epidemiological research is required to create a more in-depth understanding of the multifaceted links between disability and HIV to assist decision-makers in prioritising interventions [23]. For example, De Beaudrap and colleagues [23] outline a protocol for a population-based survey combining qualitative and quantitative data collection methods including the Washington Group questionnaire [24], designed to understand the vulnerability of persons with disabilities to HIV in Cameroon.

In a 2013 review of the intersection between HIV/AIDS and disability, Groce et al. [15] asserted that household surveys need to include questions to identify persons with disabilities. The authors suggested a need for standardized questions to allow comparable data collection and analyses, such as the Washington Group Short Set of Questions on Disability (Washington Group Short Set) [15,25]. Uganda is among the first to use the Washington Group Short Set of Questions on Disability to identify persons with disabilities in its Demographic and Health Survey. In this paper, we review the HIV Knowledge, Attitudes and Behaviour component of the 2011 Ugandan Demographic and Health Survey (UDHS) [26]. From the 2011 UDHS, a series of questions relating to HIV/AIDS was analysed comparing persons with and without disabilities in relation to HIV/AIDS knowledge, attitudes and practices. We believe that this analysis is among the first to use HIV/AIDS-related questions from Demographic Health Surveys (DHS) to provide information about persons with disabilities in comparison to those without disability and the general population.

Method

Results

Table 1 provides an overview of respondents’ descriptive characteristics by disability status. On average, persons with disabilities were generally older (32 years compared to 27 years); had no formal education (16% compared to 13%); had been previously married (17% compared to 9%); reported being poorer (21% compared to 16%); and resided in a rural area (77% compared to 70%).

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Table 1. Descriptive characteristics by disability status.

https://doi.org/10.1371/journal.pone.0174877.t001

Table 2 outlines HIV/AIDS awareness, knowledge and prevention by disability status for respondents. Regression Model 1 includes variables that relate to HIV/AIDS awareness, knowledge of prevention including prevention of mother to child transmission, and rejection of misconceptions about HIV/AIDS. Regression Model 2 considers HIV/AIDS knowledge and sexual behaviour.

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Table 2. HIV/AIDS awareness, knowledge and prevention by disability status.

https://doi.org/10.1371/journal.pone.0174877.t002

The proportion of the sample by different disability categories is shown in Table 3. 16.6% had any type of disability, i.e. at least some difficulty in one of the domains; 11.5% had a single disability; and 5.1% had multiple disabilities. 15.4% had low severity and 2.5% had high severity. 3.6% reported a hearing disability. As outlined in Table 3, there were no significant differences between genders for any of the disability types. As expected, disability was more prevalent in older individuals (Fig 1).

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Fig 1. Disability types by age groups.

https://doi.org/10.1371/journal.pone.0174877.g001

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Table 3. Disability categories by gender for 15–54 year olds.

https://doi.org/10.1371/journal.pone.0174877.t003

Multivariate analysis

Multivariate Logistic Regression Models are outlined in S2–S7 Tables. A summary of the multivariate analysis is shown in Table 4 (note that empty cells represent non-significant results). Notably, persons with disabilities had comparable levels of HIV/AIDS information with a few exceptions. However, they were more likely to indicate risk of HIV infection through mosquito bites and sharing food; less likely to report that it is okay to buy vegetables from a HIV-infected vendor (multiple disability); and less likely to approve of a healthy person with HIV/AIDS being a teacher (Table 4).

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Table 4. Multivariate analysis: HIV/AIDS awareness, knowledge and sexual behaviour results.

https://doi.org/10.1371/journal.pone.0174877.t004

Generally, persons with disabilities had fewer days since last HIV test compared to persons without a disability. For example, persons with any type of disability had 20 days fewer since the last HIV test compared to individuals without a disability. Persons with multiple disability had 27 days fewer; persons with low severity had 21 days fewer; while persons with a hearing disability had 39 days fewer since the last HIV test compared to individuals without a disability. However, persons with disabilities were statistically significantly less likely to return to the test clinic for HIV/AIDS test results compared to persons without a disability.

Also of particular note, persons with disabilities reported having a first sexual encounter at a younger age. However, the difference was minor, with a first sexual encounter generally earlier by only a few months, not years. Persons with any type of disability reported a first sexual encounter at 4 months younger than persons without a disability (p < 0.01). Individuals with a single disability reported a first sexual encounter at 2 months younger (p < 0.05); 7 months earlier for persons with multiple disabilities (p < 0.01); 4.5 months younger for individuals with low severity disability (p < 0.01) and 5 months younger for persons with high severity disability (p < 0.05). This difference was therefore greatest for persons with multiple disabilities.

Of particular concern, persons with disabilities were more likely to have reported having a STD in the last 12 months, statistically significantly higher than for persons without a disability (Table 4, Model 2). For example, individuals with multiple disabilities and persons with a hearing disability were almost twice as likely to have reported genital sores in the last 12 months compared to persons without a disability. Individuals with multiple disabilities and high severity disability were almost twice as likely to have reported a genital discharge in the last 12 months; while persons with high severity disability and a hearing disability were almost twice as likely to have reported a STD in the last 12 months compared to persons without a disability. This statistical significance was consistent for persons with all levels of disability assessed (any disability type, single, multiple, low and high severity) and disability types assessed (hearing disability); with odds greater than 1 for all disability categories compared to persons without a disability.

Discussion

Our results present an evolving pattern of understanding and actions surrounding persons with disabilities and HIV and AIDS in Uganda. Comparing persons with disabilities with members of the population without a disability, we found a solid knowledge base of HIV/AIDS among a significant part of the population of persons with disabilities, which may reflect both greater AIDS outreach efforts to the general population and specific efforts to provide more information on HIV/AIDS to persons with disabilities in recent years. While we have no large baseline against which we can compare changes over time, these new figures may indicate that current outreach efforts are making progress.

Accordingly, our findings are contradictory to those of earlier and more recent studies, which found that persons with disabilities are less knowledgeable than those without disabilities in Uganda [2,6] and elsewhere [9,10,31,43–45]. Incongruity between our findings and those of previous studies could be a result of diverse methodologies returning different results. This is among the first times that a DHS has identified persons with disabilities using the Washington Group Short Set. These disability measures identify persons with disabilities in a markedly different way relative to how other studies identify persons with disabilities. As outlined in the World Report on Disability [31], operational measures of disability contrast in relation to the aim and application of the data; how disability is conceptualized; the features of disability that are assessed including impairments, restrictions on participation and environmental factors; definitions; design of questions; reporting sources; methods of data collection; and expectations of functioning.

It is also of note that while persons with and those without disabilities reported largely the same level of knowledge, several gaps in the knowledge base of persons with disabilities appear to continue, for example, misconceptions about the risk of HIV infection through mosquito bites and sharing food. Interestingly, although some literature indicates that the Deaf population may have higher rates of misinformation because of issues related to translating HIV/AIDS messages into local sign languages [39,44,45], in our study when the Deaf community was separated during analyses, Deaf individuals did not have higher rates of misconceptions around transmissions facts than did the broader disability community.

One incongruous finding from this study was that as a group, persons with disabilities reported greater knowledge than those without disabilities about the need to use condoms to reduce risk of HIV (AOR 1.32, p < 0.05). However, our findings also indicated a higher incidence of reported STDs for persons with disabilities. If persons with disabilities reported a higher rate of knowledge about condom usage and comparable rate of actual use, it is unclear why this group would have a higher reported rate of STDs. STDs are a marker of unprotected sexual intercourse and a co-factor in HIV transmission [26]. It is possible that some persons with disabilities may have long-term STDs and have elected, or are encouraged by partners, to use condoms, which would produce a higher knowledge level even if practices are not consistent and hence our findings indicate a higher incidence of reported STDs for persons with disabilities. It is also possible that while persons with disabilities report a higher rate of condom knowledge relating to HIV and comparable rate of condom usage relative to persons without disabilities, they are not receiving adequate information about effective condom use. It is also possible that lack of accessible places to buy condoms, embarrassment or harassment while buying condoms or poverty associated with disabilities makes it harder for persons with disabilities to purchase condoms [46]. Furthermore, most significantly, these higher rates may point to lack of ability to negotiate safer sex practices with partners among persons with disabilities no matter what their level of knowledge [14].

Although the discrepancy was not great–months rather than years–we also found that persons with disabilities reported becoming sexually active earlier than their peers without disabilities. Interestingly, these findings were true for both males and females. There may be a number of reasons for this finding, including targeted abuse by those without disabilities; persons with disabilities being anxious to prove that they are just like everyone else; or persons with disabilities being anxious to prove to the data collectors that they are just like everyone else and overstating their early sexual activity. Although often treated as asexual, a number of researchers and advocates have called attention to the fact that persons with disabilities may be more susceptible to being targeted for, or suffer from low self-esteem that make them at risk for, abuse and exploitation at an early age [13,14,47–50]. In a qualitative study by Yousafzai et al. [6], Ugandan and Rwandan adolescents with disabilities reported low self-esteem and self-efficacy, which impacted on control over safe sexual relationships; a substantial level of exploitation, targeted abuse, and rape were reported. In this study, while age at first sexual encounter was slighted earlier but comparable to peers without a disability, we did not ask the nature of this first encounter and this may also differ. In a study of knowledge, attitudes, and practices of persons with disabilities in Uganda relating to reproductive health and HIV/AIDS, 22% of women with disabilities reported that they were raped at their first sexual encounter [51]. Our findings, in conjunction with the findings from Mulindwa, indicate that further study on this issue is warranted.

A key finding is that persons with disabilities were as likely to be tested for HIV as the rest of the population but were significantly less likely than persons without disabilities to return to receive their test results. Persons with disabilities often, although not always, have health needs originating from their primary condition, and therefore on average may have more health needs than the majority of the population [15,52,53]. Accordingly, more inpatient and outpatient care is sought by persons with disabilities than those without disabilities [31,54]. While disability is not a ‘health problem’, some persons with disabilities do have increased health needs [55,56]. Persons with disabilities are likely to be seeking healthcare. Hence, it is unclear why our findings indicate that persons with disabilities are less likely to return to receive their HIV test results. We hypothesise several reasons for this, outlined below.

Transportation to clinics may be acting as a barrier for persons with disabilities regarding their ability to return to receive test results. A growing body of literature indicates that lack of accessible transportation and expense of transportation among a group who are routinely disproportionately poor may limit the ability of persons with disabilities to return for test results compared to their peers without disabilities [57]. Nixon et al. [19] reported the challenges experienced by persons with mobility or visual impairments in Zambia, who frequently required assistance to travel to clinics for testing, which resulted in double transportation costs for an assistant, or the need to request favours from neighbours.

Physical access to clinics is often discussed as a barrier to receiving test results for persons with disabilities [12,58,59]. In a qualitative study conducted by Tun and colleagues [60], one of the most significant barriers to accessing facility-based HIV services for persons with disabilities in Uganda was related to physical accessibility to and of HIV services facilities. Presumably persons with disabilities who come for an initial test have already found the local clinical services accessible, but if results are provided someplace other than where the initial testing took place, accessibility may be an issue.

Inaccessible formats of HIV test results may be presenting as a barrier to the receiving of HIV test results by persons with disabilities. In a qualitative study of perceptions of HIV-related health services for persons with disabilities who are HIV-positive in Zambia [19], numerous participants reported stories of individuals being denied testing due to healthcare workers experiencing communication constraints. Yousafzai et al. [45], in a qualitative study of perceptions of HIV/AIDS amongst persons with disabilities in Swaziland, reported apprehension by persons with disabilities relating to clinical visits due to communication, social, and physical barriers. Accordingly, simplified formats, pictures, Braille, or sign interpreters may be required [12,59].

Healthcare workers may place lower priority for good quality care on ensuring follow-up care for persons with disabilities when there are limited HIV services and medications available [12]. If persons with disabilities are not treated with dignity and their privacy ensured when they come for their initial tests, they may be reluctant or unwilling to return for the results. For example, in a qualitative study by Yoshida and colleagues [50] on the experiences of persons with disabilities who had contracted HIV in Zambia, participants reported discrimination in relation to a lack of expectation of persons with disabilities in HIV clinics. Yousafzai et al. [6], in a study of adolescents with disabilities in Rwanda and Uganda, reported that persons with disabilities were marginalized from HIV services as a result of health workers’ assumptions that they were not sexually active. It is also asserted that families and caregivers of persons with disabilities frequently do not adequately understand their sexual and reproductive health requirements [61], and this may result in, among other things, lack of encouragement by family members of persons with disabilities to return for follow-up results.

Conclusions

Uganda has a strong history of policy and programmes that support the rights of persons with disabilities. This is evident in Uganda’s national legal framework [80]. The Ugandan Constitution in Article 32 upholds that “the State shall take affirmative action in favour of groups marginalised on the basis of gender, age, disability or any other reason created by history, tradition or custom, for the purpose of redressing imbalances which exist against them” [81]. Disability is also recognized in the Uganda 2010 HIV Counselling and Testing Policy, which in Article 6.2 recognizes that persons with disabilities may be at higher risk of HIV infection and also may experience difficulty in accessing services. The Article stipulates that all HIV Counselling and Testing services address the unique needs of persons with disabilities [82].

In a review of eighteen national strategic plans for HIV and AIDS in Eastern and Southern Africa on the inclusion of persons with disabilities, Hanass-Hancock and colleagues [83] found that the Ugandan plan reflected best practice in the region as it recognized that persons with disabilities have been excluded in the response to HIV and AIDS and that HIV is increasingly a cause of disability. According to a World Bank study [2] of HIV/AIDS and disability in Uganda, Disabled People’s Organizations have also been very involved in the response to AIDS; for example, the National Union of Disabled Persons of Uganda [84], a domestic umbrella non-governmental organization of persons with disabilities, established the Disability Stakeholder HIV/AIDS Committee in 2005 [85], which has significantly contributed to coordinating the disability sector around HIV/AIDS.

Uganda is also one of the first countries to include the Washington Group Short Set in its national DHS. As proposed by Mitra [18], the adoption of the Washington Group Short Set in DHS activates the data revolution required to assess progress towards inclusive development and to monitor implementation of the UNCRPD–data crucial to assessing the inclusion, human rights and opportunities of populations with disabilities. However, the parallel inclusion of the Washington Group Short Set in Uganda’s AIS would provide valuable data relating to HIV and disability, including HIV prevalence for the population with disabilities. Such inclusion of disability measures in Uganda’s AIS would be in keeping with the requirements of the UNCRPD and its 2008 Optional Protocol [7], which Uganda has ratified [86], specifically its Article 31 on ‘Statistics and Data Collection’, specifying that “States parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention”.

Furthermore, while our findings suggest comparability between persons with disabilities and the remaining population in HIV knowledge and in testing rates, a key finding is that persons with disabilities were less likely to receive results from their most recent HIV test. Reports of slightly earlier age of first sexual experience and strikingly higher rates of having had an STD within the past 12 months among persons with disabilities compared to their peers without disabilities is of significant importance and further research is needed to provide insights into these differences and other identified discrepancies between those with and without disabilities in Uganda.

Our findings are consistent with the gap between laws, policies and practice regarding disability in Uganda discussed by Abimanyi-Ochom and Mannan [80]. According to the National Union of Disabled Persons of Uganda [85], only modest attention has been afforded to disability and HIV/AIDS in Uganda, and no national study to date has established the prevalence of HIV/AIDS among persons with disabilities. As contended by Murangira [1], data collected on persons with disabilities and HIV/AIDS in Uganda could be greatly strengthened. For example, cards provided to Voluntary Counselling and Testing clients indicate that statistics are not being collected on disability and HIV/AIDS, creating a gap in informed approaches relating to persons with disabilities and HIV/AIDS. There is a call for routine and comprehensive collection and analyses of systematic disability data in Uganda, with the aim of evaluating policies and performance, including with regards to equities in access to health [80]. As expressed by Murangira [1] (p.31):

We disabled people in Uganda are aware of the enormous commitment the country and various stakeholders have made in the struggle against HIV/AIDS and are aware of the enormous financial constraints faced in alleviating the pandemic. But, in the area of our national health policy and services delivery, we believe there has been a tremendous oversight of the needs of disabled people and the impact that HIV/AIDS has on them.

Calls both at a national and global level are evident for HIV policies and programmes that explicitly recognize the need for HIV and rehabilitation services to be inclusive of persons with diverse disabilities [50]. The response to HIV/AIDS will only be successful if disability is consistently included in all outreach efforts [14,48,61,87].

Findings from this Ugandan national DHS raise as many questions as answers–both about successes and gaps in reaching the population with disabilities, and in the comparability of methodologies being developed to help collect and analyse findings to measure HIV/AIDS knowledge, attitudes and practices for this large and long overlooked population.

Supporting information