Jill Hanass-Hancock

Disability and HIV/AIDS - a systematic review of literature on Africa

This systematic review focuses on empirical work on disability and HIV/AIDS in Africa in the past decade and considers all the literature currently accessible. The review presents data from different surveys and summarizes the findings. In this way, it convincingly reveals that people with disabilities are very vulnerable to contracting HIV, and lack access to information, testing and treatment. The review further reveals gaps in the research and areas of concern. While vulnerability and accessibility have been investigated, there are few prevalence studies or evaluations available. A certain amount of work has focused on the deaf population, but little has been done for other disability groups. A growing area of concern is sexual abuse and exploitation of people with disabilities. Only a few studies or interventions focus on this crucial area.This systematic review focuses on empirical work on disability and HIV/AIDS in Africa in the past decade and considers all the literature currently accessible. The review presents data from different surveys and summarizes the findings. In this way, it convincingly reveals that people with disabilities are very vulnerable to contracting HIV, and lack access to information, testing and treatment. The review further reveals gaps in the research and areas of concern. While vulnerability and accessibility have been investigated, there are few prevalence studies or evaluations available. A certain amount of work has focused on the deaf population, but little has been done for other disability groups. A growing area of concern is sexual abuse and exploitation of people with disabilities. Only a few studies or interventions focus on this crucial area.

The fields of HIV and disability: past, present and future

This article provides an historic overview of the fields of disability and HIV. We describe this area of concern in terms of “fields” versus “a single field” because of the two related but distinct trends that have evolved over time. The first field involves people living with HIV and their experiences of disability, disablement and rehabilitation brought on by the disease and its treatments. The second involves people with disabilities and their experiences of vulnerability to and life with HIV. These two fields have evolved relatively independently over time. However, in the final section of this article, we argue that the divide between these fields is collapsing, and that this collapse is beginning to produce a new understanding about shared concerns, cross‐field learning and the mutual benefits that might be realized from integrating policy and programmatic responses. We close by identifying directions that we expect these merging fields to take in the coming years.

Inclusion of disability within national strategic responses to HIV and AIDS in Eastern and Southern Africa

Purpose. National strategic plans (NSPs) provide a framework for a comprehensive response to human immunodeficiency virus (HIV) including strategies such as prevention, treatment, care and support for all affected. Research indicates limited recognition of the interrelationship between disability and HIV in the Eastern and Southern Africa (ESA). This paper analyses the extent to which NSPs in ESA address disability, and identify good practice. Method. Using a tool based on relevant rights in the UN Convention on the Rights of Persons with Disabilities and the UNAIDS International Guidelines on HIV and Human Rights, a review of 18 NSPs in ESA was conducted to determine the extent to which they included disability. Results. Although many NSPs fail to integrate disability issues, there are examples of good practice from which much can be learned, particularly with respect to disability and HIV-prevention efforts. There is limited provision for treatment, care and support for disability in the context of HIV and AIDS. Conclusions. Many NSPs in ESA are due for review, providing ample opportunities for the development of disability-inclusive responses. Future NSPs need to integrate the needs of people with disabilities within structures, programmes and monitoring and evaluation, and make provision for increased rehabilitation needs caused by HIV. A rights-based approach and specific financial allocation of resources are crucial for this process.

Disability and Living with HIV: Baseline from a Cohort of People on Long Term ART in South Africa.

Background Through access to life saving antiretroviral treatment (ART) in southern Africa, HIV has been reconceptualised as a chronic disease. This comes with new challenges of HIV-related co-morbidities and disabilities. We still lack an understanding of the types and scope of disabilities experienced by people on long term ART and how this impacts health, adherence, and livelihood. This paper describes the results of a cohort study examining the new health- and disability-related needs of the millions of people on ART in the region. Methods Data was collected from a cohort of people who had been on ART for six months or longer in a semi-urban public health care setting in South Africa. 1042 adults (18 and older) participated in the cross-sectional study which investigated disabilities/activity limitations, health, ART adherence, depression symptoms, and livelihood. We analysed the associations between these constructs using descriptive statistics, and bivariate and multivariate analyses. Results A large number of participants (35.5%) obtained a weighted score of two or more on the WHODAS 2.0 indicating possible activity limitations. A positive relationship was found between activity limitations and depression symptoms, adherence, and worse health outcomes, while none was found for BMI or CD4 count. These associations varied by type of activity limitations and, in some cases, by gender. Conclusion Activity limitations are potentially experienced by a large portion of people on ART in southern Africa which impacts health and ART adherence negatively. These results highlight the importance of better understanding the new health-related needs of people who are on long term ART, as well as the nuances of the disability they experience. This is urgently needed in order to enable HIV-endemic countries to better prepare for the new health-related needs of the millions of people on ART in southern Africa.

Perceptions of HIV-related health services in Zambia for people with disabilities who are HIV-positive

Despite the emerging body of literature on increased vulnerability to HIV among people with disabilities (PWDs), there is a dearth of evidence related to experiences of PWDs who have become HIV‐positive. This priority was identified by a disability advocacy organization in Lusaka, Zambia, where the prevalence of HIV and of disability is each approximately 15%. The purpose of this study was to explore perceptions and experiences of HIV‐related health services for PWDs who are also living with HIV in Lusaka, Zambia.

“When I was no longer able to see and walk, that is when I was affected most”: experiences of disability in people living with HIV in South Africa

Abstract Purpose: HIV-related disability is an emerging issue in countries where HIV is endemic. This study aimed to understand experiences of disability in patients living with HIV in South Africa using the International Classification of Functioning, Disability and Health (ICF) as a guiding framework. Methods: In-depth interviews were conducted with 19 HIV-positive people receiving ART through a public hospital in KwaZulu-Natal. Data were analyzed using collaborative qualitative content analysis. Results: Participants described a variety of impairments related to mental, sensory, neuromusculoskeletal, skin, cardiovascular, digestive or reproductive systems. A tenuous relationship was evident between HIV and mental health impairments and the experience of other disabilities. Impairments affected participants’ activity levels, especially mobility, domestic life, self-care and ability to work. Activity limitations affecting livelihood were often of more concern to participants than the impairments. Furthermore, women and men appeared to experience disability related to activities relevant to gendered norms in their cultural context. Conclusions: More understanding of the intersections among HIV, disability, gender and livelihood is needed. To respond to the increased need to manage disability within HIV care in Africa, HIV programs should include rehabilitative approaches, address concerns related to livelihoods in households with disability and consider gender differences in the experience of disability. Implications for Rehabilitation HIV, its opportunistic infections and the treatments associated to them are related to health conditions and impairments that have the potential to develop into disability. Rehabilitation professionals in HIV endemic countries have therefore a larger and changing number of people living with HIV and need to consider the impact of the disease on the rehabilitation process. Mental health issues and disability might be interrelated and affect antiretroviral treatment (ART) adherence. Hence, rehabilitation has to use a holistic approach and integrate different therapy approaches (e.g. physiotherapy and mental health). The experience of living with HIV and developing disability has unreflected gender dynamics that need to be considered in rehabilitative care. Hence, the rehabilitation process has to consider the cultural realities and gendered experience of the condition. The study highlights the interrelationship between disability levels, the influence of environmental and social factors, and the changing experience related to gender. Hence, rehabilitation professionals in resource-poor settings have to go beyond the clinical response and therapy approaches in order to improve the activity and participation of people with disabilities and those living with HIV in their homes and communities. Community or home-based care might be avenues to further explore.

Physiotherapy rehabilitation in the context of HIV and disability in KwaZulu-Natal, South Africa

Abstract Purpose: The purpose of this study was to describe the experiences of people living with HIV (PLHIV) who had undergone a physiotherapy-led rehabilitation programme, with the aim of informing and improving future rehabilitation. Methods: The study population included patients living with HIV who were referred for physiotherapy rehabilitation at a public-funded KwaZulu-Natal hospital. Eight participants were considered for final analysis in the study. A qualitative research design was adopted using in-depth interviews to explore their experiences of their rehabilitation programme. Additionally all eligible participants were requested to complete the World Health Organisation Disability Assessment Schedule. Results: Participants presented varying activity-related challenges with mobility, self-care and life activities being the most severely affected areas. Participants showed little understanding of their health conditions, prescribed medication and in some cases therapy. HIV and disability impacted their daily lives, adversely affecting work and domestic activities. Although participants reflected positively on the rehabilitation experience they faced a number of barriers to accessing continued rehabilitation. Conclusion: PLHIV who experience disability are affected in major life areas but the current model of delivering rehabilitation provides a number of barriers to patients. A more accessible approach of delivering HIV-care and rehabilitation needs to be developed. Implications for Rehabilitation Physiotherapists and other rehabilitation professionals, particularly those working in the South African public sector, need to consider developing and implementing home-based rehabilitation interventions for patients living with HIV and disability. This will counter some of the barriers these patients face in accessing hospital-based therapy. With the increasing incidence of HIV-related disabilities as PLHIV live longer lives, rehabilitation professionals working with this patient population should keep up to date with recent literature and practical training courses related to the disease and its management.

A systematic review of Health Technology Assessment tools in sub-Saharan Africa: methodological issues and implications

BackgroundHealth technology assessment (HTA) is mostly used in the context of high- and middle-income countries. Many “resource-poor” settings, which have the greatest need for critical assessment of health technology, have a limited basis for making evidence-based choices. This can lead to inappropriate use of technologies, a problem that could be addressed by HTA that enables the efficient use of resources, which is especially crucial in such settings. There is a lack of clarity about which HTA tools should be used in these settings. This research aims to provide an overview of proposed HTA tools for “resource-poor” settings with a specific focus on sub-Saharan Africa (SSA).MethodologyA systematic review was conducted using basic steps from the PRISMA guidelines. Studies that described HTA tools applicable for “resource-limited” settings were identified and critically appraised. Only papers published between 2003 and 2013 were included. The identified tools were assessed according to a checklist with methodological criteria.ResultsSix appropriate tools that are applicable in the SSA setting and cover methodological robustness and ease of use were included in the review. Several tools fulfil these criteria, such as the KNOW ESSENTIALS tool, Mini-HTA tool, and Multi-Criteria Decision Analysis but their application in the SSA context remains limited. The WHO CHOICE method is a standardized decision making tool for choosing interventions but is limited to their cost-effectiveness. Most evaluation of health technology in SSA focuses on priority setting. There is a lack of HTA tools that can be used for the systematic assessment of technology in the SSA context.ConclusionsAn appropriate HTA tool for “resource-constrained” settings, and especially SSA, should address all important criteria of decision making. By combining the two most promising tools, KNOW ESSENTIALS and Multi-Criteria Decision Analysis, appropriate analysis of evidence with a robust and flexible methodology could be applied for the SSA setting.

Closing the gap: training for healthcare workers and people with disabilities on the interrelationship of HIV and disability

Abstract Background: HIV and disability are interrelated providing a double burden to HIV endemic countries in East and Southern Africa and their already fragile health systems. Although literature reveals that people with disabilities are particularly vulnerable to HIV and that HIV, its opportunistic infections and treatments can cause disability, only few interventions target this issue and none have been evaluated in this region. Methods: Formative evaluation was undertaken with regard to the effectiveness of a workshop-based intervention for healthcare workers and people with disabilities on the intersection of disability and HIV in order to inform the further development of this intervention. The formative evaluation assessed participants’ perception of the inclusion of disability in HIV services and of opportunities to initiate change after the workshops. It also captured their experiences in utilising knowledge and skills after the workshops using quantitative (short checklist and ranking exercise) and qualitative (semi-structured interviews) methods of inquiry. Frequencies and conventional content analysis were used in the analysis of the data. This study presents an example of applied research conducted under real-world conditions. Results: 60 healthcare workers and people with disabilities took part in this pilot workshop training and participated in the formative evaluation. Healthcare workers and people with disabilities alike identified various barriers to access health services. Reasonable accommodation was perceived as being mainly absent by most participants, while some participants indicated a lack of physical accessibility in the form of universal design. Participants also identified a lack of integration of services and disability-related skills within the healthcare staff. Participants reported a number of enablers, success and challenges while implementing the knowledge from the workshops related to structural issues, service provision and integration. While participants worked on health workers’ attitudes and accessibility of services, screening and referrals practice was not improved through the workshops. Conclusions: Formative evaluation indicates that the workshops can be effective not only in sensitising healthcare workers and people with disabilities to opportunities to improve services for people with disabilities but also to provide knowledge and skills to initiate improvements. Skills that need more practical training (e.g. screening for disability) need to be trained in more detail, and this will inform the adaptation of the workshops. However, the workshop evaluation also revealed that without policy implementation and budget allocations this change would only be limited. Implications for Rehabilitation HIV, its co-morbidities and treatments cause health conditions and impairments that have the potential to develop into disability. People with disabilities are at increased risk of exposure to HIV. Rehabilitation professionals, healthcare workers and people with disabilities can be sensitised in a three-day workshop on the relationship of disability and HIV. However, the trained participants can only implement no or low-cost elements of interventions, while high-cost interventions need budget allocations at provincial and national level.

Using intersectionality to explore experiences of disability and HIV among women and men in Zambia

Abstract Purpose: Little is known about the experiences of people with disabilities (PWD) who live with HIV. Existing research largely assumes a “double burden” approach, which views HIV as doubling the load for people already burdened by disability. Intersectionality (a dynamic process of converging systems of relationships) offers an alternative approach for understanding differences in experience. This study uses an intersectional approach to explore the experiences of PWD in Zambia who have become HIV-positive. Methods: We conducted semi-structured, in depth interviews with 21 PWD who live with HIV in Zambia (12 women, 9 men). Participants had various impairments (visual, hearing, mobility, intellectual). Interviews were conducted to meet participants’ accessibility preferences. Results: Our intersectional analysis demonstrates the dynamic and situational emergent meanings and consequences for PWD who are living with HIV related to: (1) meanings of HIV and disability linked with time and trajectory; (2) oppression and negotiation related to accessing health services and (3) social roles and relationships. Three case studies illustrate these circumstances. Conclusions: Intersectionality offers a complementary approach for examining the complex interrelationship among HIV, disability, gender and time among PWD living with HIV. Findings illustrate directions for improved services and policies for this important group. Implications for Rehabilitation Rehabilitation services need to take a cross-disability (multiple disabilities) approach working with people living with HIV and disability. Rehabilitation, as illustrated by a CBR approach, needs to include services that will facilitate not only health, but education, jobs and housing for people living with HIV and disability. Rehabilitation needs to make more direct connections with Zambia social service sector to help address the fluctuating experience of living with HIV and disability.