Meeting the Challenges of Disability and HIV in East Africa

To the Editors: Since the introduction of combination antiretroviral therapy, people are living longer, but often with physical, psychologic, and social changes that affect quality of life.1 These changes may be a result of HIV/AIDS, associated opportunistic infections, and the treatments for these conditions.2,3 However, the type and magnitude of HIV-associated disabling conditions is poorly understood, particularly in resource-limited settings. The majority of research on HIV-associated disabilities stems from North American and European settings. There is recently emerging interest in disabilities in resource-limited settings, yet data on the prevalence of disabilities from Africa are sparse.1,4,5 Most published studies have examined qualitative issues of awareness or knowledge about risk factors for HIV/AIDS among people with disabilities.4,5 There are currently no available data on the magnitude of HIV-associated disabilities from Central and East Africa. Since 1998, we at Mildmay Uganda, a regional HIV/AIDS charity in East Africa providing comprehensive HIV/AIDS care and training, have tried to take an active role in HIV-associated disabilities, prevention, and management. Mildmay Uganda has a total of 194 staff to provide care to more than 22,000 patients in central Uganda with an approximate annual budget of $10 million US dollars. Physical impairment and disabilities management is an integral part of the pediatric and adult HIV/AIDS-related care offered at Mildmay Uganda. Mildmay's multidisciplinary team offers holistic care to its clients within the context of a family unit, in the community, and through other institutional partners. A core rehabilitation team consists of three physiotherapists, two occupational therapists, and a nutritionist working full-time and are supported by other members of the multidisciplinary team. At enrolment, for HIV/AIDS care, 1178 (5.4%) patients had a physical impairment or condition predisposing to disabilities, according to criteria from the World Health Organization International Classification of Functioning extracted from the diagnostic category of the physical therapy patient registry. Among these, 955 (81.1%) were adults and 223 (18.9%) were children. Table 1 provides a description of the types of disabilities experienced by adults and children.TABLE 1: Description of Disabling Conditions and Conditions Predisposing to Disabilities Experienced by HIV-Positive Adults and Children Attending Mildmay in Uganda6At Mildmay Uganda, tuberculosis of the spine is the main cause of paraplegia; toxoplasmosis is the main cause of hemiplegia; and progressive HIV is the main cause of neurocognitive impairment. The prevention of disabilities has required an active role in early diagnosis and treatment of HIV, routine prevention and treatment of opportunistic infections (eg, tuberculosis, cytomegalovirus, toxoplasmosis), rational use of drugs that may effect vision or hearing, and early initiation of rehabilitative services, particularly physiotherapy and occupational therapy, yet as expected in settings such as Uganda, resources are limited and skilled rehabilitation professionals are scarce. Our approach has required the development of flexible programs delivered in health clinics, patients' homes, and the community. Health clinics offer both physiotherapy (eg, exercises to strengthen muscles, mobilize joints and relieve pain, and therapeutic play for children) and occupational therapy (eg, re-education in activities of daily living, energy conservation training, stress management, relaxation, and orientation training). In addition to physicians, phys iotherapists, and occupational therapists, patients may see social workers, nurses, and pastoral workers for physical impairment management at the clinic. Clinics are equipped with the necessary infrastructure and devices to assist patients. Transportation to and from the health clinic is available for those in need, and communication assistance is provided to those who are deaf or blind. Home assessments and home rehabilitation programs need to be provided to patients. Training is provided to caregivers and patients in the home, and adaptations and accessibility devices are provided as needed. In the community, efforts have been made to train community-based volunteers to assist patients in physical impairment management. Volunteers are trained to provide the necessary infrastructure such as ramps, rails, barricades, and adapted toilet facilities to assist patients in their activities of daily living in the community. Assistive devices such as wheelchairs and walking frames are also provided to patients with walking impairments. In our assessment of patients attending Mildmay, the most common conditions presented were paraplegia and hemiplegia and cognitive impairment. In Uganda, and in most of Africa, rehabilitation services and appropriately trained health workers are scarce. Thus, efforts are needed to improve the skills of existing health providers to respond to HIV-associated disabilities as well as to have access to appropriate rehabilitation tools to respond to the increasing needs of patients. Although antiretroviral therapy is the most important intervention to reduce the impact of the AIDS epidemic, as the epidemic matures, there is a need to refine and improve care for those requiring complex care. Emmanuel Luyirika, MBChB, MMed Ekiria Kikule, MBChB, MMed Moses Kamba, MBChB Florence Buyondo, BSc Richard Batamwita, MPH Amber Featherstone, MD, MPH Edward J. Mills, PhD, MSc Mildmay Uganda, Kampala, Uganda; and Faculty of Health Sciences, University of Ottawa, Ottawa, Canada

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