Although people living with HIV can be healthy and strong and live perfectly ‘normal’ lives they can experience a range of symptoms that will affect their day-to-day life, and for which they will need care and assistance. In a survey of home-based care patients in Malawi just 15% were able to live as if they did not have the disease. More than one-third needed help with washing and walking, and 28% needed help going to the toilet.11 In a study in South Africa, around 16-17% of people could not control their bladders or bowels and needed help getting on and off the toilet. A similar proportion required help with washing themselves. Poor sanitation makes many of these tasks all the more difficult. In the South African survey less than half of the households had a tap and only 20% of rural homes had access to a flush toilet, with a quarter having no access to any form of toilet or latrine.1
Given the often debilitating effects of HIV, people living with the disease may need assistance performing simple tasks that most of us would take for granted. These could include washing, cooking, feeding, cleaning, purchasing household essentials, going to the toilet and other needs not necessarily specific to AIDS but essential in helping a person live a relatively stable life.
More HIV-related tasks could include purchasing, administering and supporting adherence to ARV drugs and pain relief medication if the infected person is receiving such treatment, as well as helping with nutrition, as the person’s diet may differ from other members of the household. Monitoring and recording progress, making notes of events such as toilet visits, fluid intake and symptom occurrence are also other tasks that can be undertaken by family and home-based care workers and volunteers.13 These very practical measures are in addition to seeing to the person’s social, psychological and emotional needs – often termed ‘psychosocial’ needs – which all of us have but which are often broader and more severe if living with HIV
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