Care and support for people living with HIV/AIDS

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Care and support for people living with HIV/AIDSCare for people with HIV involves the health system at several levels.• Does the reform respect the three principles of health-care organization:– integrated care achieved through teamwork by care providers of differentdisciplines?– continuity of care throughout the levels of the health system?– a focus by the care provider on the client’s priorities?Inclusion of HIV-positive people in society starts at the health centre and thehospital.• Does the health reform focus on the personal development of health personnel?• Does it enable them to feel more comfortable about HIV/AIDS issues in their privatelife?• Does it help them avoid discriminatory and judgemental attitudes when caring forHIV-infected patients?People with HIV have a great deal to contribute to the organization of thehealth care system.• Do key clients have a say in the design and implementation of health reforms?Psychological and social support and other measures toalleviate the impact of HIV/AIDSPeople living with or affected by HIV need support in confronting the multiple challengesof a chronic, incurable and generally fatal condition that can result in socialostracism (see page 38) and economic disaster (see page 27).Psychosocial support – an essential element of the care and support package (seeTable 1, page 98) – ranges from purely psychological support to the social measuresneeded to create an environment in which those affected can cope and thrive. Sometypes of support straddle the line.Family members, representatives of religious communities, health-care providersand counsellors are important sources of psychological and spiritual support forcoping with HIV infection in oneself or the family. However, they are often in need ofsupport themselves. There is growing evidence of the great stress associated withcare-giving, particularly in relatives who form the majority of front-line carers indeveloping countries. While ways of managing this stress are becoming betterunderstood, it is unclear how these coping mechanisms can be financed.An important goal of social support is inclusion – enabling affected people to livewithout fear and to continue functioning as normal members of society. Among the93
Report on the global HIV/AIDS epidemic – June 2000wide-ranging measures needed to bring this about are public statements by communityand religious leaders urging solidarity with those affected, and legal and othermechanisms for protecting HIV-affected individuals and survivors from discrimination,loss of inheritance and property-grabbing.Psychological and social support can help reduce stigma and other negative consequencesof being HIV-positive and in this way make people less reluctant to seekHIV counselling and testing. In turn, the staff of counselling and testing facilities cancontribute to psychological support, for example, by assisting individuals to sharethe news of their test result with their spouse or a trusted relative. Their contributioncould be even greater if voluntary counselling and testing services were more widelyaccessible and more welcoming to certain categories of clients. In particular, theseservices need to be better geared to attracting young people, couples and men.Another challenge is time. In busy community health settings, where staff have toomuch to do, it is important to find ethically acceptable ways of reducing the timerequired for counselling.Associations of people living with HIV are a good example of community mechanismsthat provide both psychological and social support. Formed to counter thesocial isolation often experienced by HIV-positive people and to allow them toshare and discuss their experiences and problems openly and safely, these mutualsupport mechanisms provide peer support and help members cope with discriminationand stigma. One such group, at an antenatal clinic in South Africa, wasdescribed by the women members as the only place where they could relax and bethemselves.However, support groups are generally unable to meet one of the most importantchallenges facing people in developing countries: lack of income. Most people withHIV or AIDS are or become unemployed, and the stark reality is that unless they canrely on broader support from government and society there is little a communitygroup can do to alleviate this impact.Alleviating economic impactMany support organizations have discovered the pitfalls of trying to alleviate theeconomic hardship of their members. The AIDS Support Organization (TASO) ofUganda, which runs support groups for people living with HIV, asked members ofone group how their home support could be improved. Three-fifths said theyneeded capital to start an income-generating activity and close to half asked forincreased assistance of the kind already being provided, such as staple foodstuffsand cash for school fees, uniforms and books to enable their children to go toschool.In one scheme, selected TASO centres received funds to be given as revolvingloans for income-generating projects. While 75% of the projects were laterassessed as having been successful enough for the clients to repay their loans,94
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Care and support for people living with HIV/AIDS

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