The number of people living with HIV has been steadily increasing from 28.9 million in 2000 to 36.7 million in 2016. By 2020, middle-income countries will be home to 70% of the population living with HIV. South Africa, Nigeria and India have the highest HIV prevalence in the world and are all defined as being middle-income economies. Such countries are wrongly assumed to be in a better position to treat HIV/AIDS so are offered significantly less funding from the international community in comparison to countries classed as low-income. They also face restricted access to generic antiviral drugs that play a huge role in the fight against HIV/AIDS.
Just like people suffering from other long-term illnesses, those living with HIV/AIDS rely on the dedication of loved ones to provide them with the care they need. Research in India has found that a number of these carers suffer depression and feel that they have no hope for the future. One of the reasons for these feelings is that they find caring for someone with HIV/AIDS difficult as they do not receive any training or guidance on how to provide the care, or any form of support.
It is common for family carers to carry the burden of caring alone, regardless of the illness or disability their loved one lives with, which can be damaging to their own mental and physical health. This burden is even greater for the people who care for those living with HIV/AIDS due to the stigma attached to the condition. Carers in India have stated that if the topic of HIV is ever mentioned within their communities, they ‘suddenly see hatred in the minds of their neighbours’. As carers do not want this hatred to be directed at themselves or their family, they cannot disclose the HIV status of the infected person and continue to provide the care alone, in secret.
Our work at Carers Worldwide could be invaluable to those who provide care to people living with HIV/AIDS. As we grow we aim to increase the number of these carers that we reach. By working closely with existing NGOs and Partners in developing countries, our approach can ensure that the unique needs and demands of each community are understood and met. For example, our research in South Africa has found that setting up networks of community carers who could provide care in a central location in the form of a “day-care centre” (thus giving patients’ carers the opportunity to pursue education or employment) would integrate well with the strong hospice movement already existing there. In all low and middle income countries, our commitment to promoting advocacy would enable communities to be given a voice that would speak out to remove the social stigma attached to HIV/AIDS and to provide the support necessary for family carers to continue their vital but as yet unrecognised role.
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