HIV causes Aids, but creating an epidemic on the scale of South Africa’s needed fuel in the form of poverty, gender inequality and ignorance.
Stopping the epidemic means not only preventing people from getting infected but also improving the wellbeing and environment of those most affected and at risk.
Markers of need are clearly demonstrated in a survey of household responses to HIV/Aids to be released soon. The survey of 771 households with at least one Aids-sick adult was commissioned by the United States-based Henry J Kaiser Family Foundation and conducted by Abt Associates in four provinces.
The survey sample was selected from Aids-affected households that were in contact with home-based care organisations and so, although some families lived in remote areas, none were totally isolated.
Even so, the amount of help the families had been able to get was an indictment of both state and NGO welfare services in South Africa.
Despite being selected for interviews by home-based care organisations, less than half the families in the survey said they were getting help from such groups. Such a damning response may be the result of possibly unrealistic expectations of what these organisations can provide; or it could mean that, for whatever reason, home-based care groups are failing to deliver the kind of help people want.
Similar shortcomings were revealed in the state’s welfare system. While the debate about a national basic income grant rages on, households in this survey would be significantly better off if they received just the grants to which they are already entitled.
Many families were surviving on old-age pensions — 20% of household heads were women older than 60 and pensions were the second most common source of household income after formal employment. But only one in five families received other forms of state financial assistance such as child support, disabi-lity, foster care, or care-dependency grants. Of these, the disability grant was most widely received — but unfortunately for families this grant ends when the recipient dies.
Rural households had a slightly greater level of access to state support, as did the poorest households interviewed, although this needs to be put in context. The vast majority of families in the survey were poverty stricken with an average household income of less than R1 000 a month.
The reasons for the low uptake of state financial aid were unclear, although lack of awareness was probably a significant factor. For example, one woman said her household goes hungry when food parcels or handouts run out.
But she is only aware of the state pension, not of the other forms of state assistance she is entitled to.
”I am a granny of nine grand- children but the pension only comes when you are 60. I am 49,” she said.
Accessing grants is a problem. Sometimes there can be institutional blockages. For example, grants that can only be paid when children are formally fostered or placed in homes are useless to families who simply take in needy child relatives without going through formal placement proceedings.
And the mechanism for getting grants can be slow and unhelpful.
Another interviewee had sold her furniture to pay the school fees of the children she cares for.
”It was my daughter Maria who died leaving me her two children. I also have Maria’s sister’s children and my son’s child to look after. At least I get the pension from this year. R570 is very little. For the child support grants they always say come next month.”
Growing numbers of parentless children — 22% of children in households surveyed were maternal orphans — mean that greater access to child-related support is drastically needed. Such financial grants would help keep children in school, not only improving their prospects for the future but also providing a means of nutritional support through school feeding systems. Similarly, schools need to be reminded that no child should be excluded because his or her family is too poor to pay school fees or buy uniforms.
People affected by HIV/Aids need financial and medical help, whether they are living with the virus or caring for an infected relative.
Most of the families interviewed had good access to primary health-care services and a high proportion said they received good or very good service at local clinics. However, satisfaction levels dropped dramatically when families used public hospitals.
In part this is a reflection of the lack of effective care public-sector hospitals can give late-stage Aids patients. Without anti-retroviral drugs the best most can do is to treat opportunistic infections, which in all likelihood re-emerge when the treatment is over. Just over one in five people who rated hospitals badly cited lack of effective treatment in that patients didn’t get better. Hospitals could also supply palliative care, but overstretched institutions are forced to triage, with the result that the terminally ill are often sent home to die.
Reflecting this, 49% of people unhappy with hospitals said it was because of lack of care, and the fact that people were discharged because they were too ill, or dying.
Another indicator of the strain on the public-health sector as a result of HIV/Aids was the fact that between 40% and 60% of people in the survey living with Aids had never been admitted to hospital, even though hospitalisation should be inevitable given the progression of the disease. Households and community organisations rather have to take up the strain of caring for the dying.
Despite all the education campaigns and the extent and length of the HIV/Aids epidemic in South Africa, almost one in five people unhappy with public hospitals specifically complained about the attitude of health-care workers. Complaints included workers chasing patients away, not helping them and not caring about them. This may indicate the need for greater anti-discrimination campaigns, or it could reflect burnout on behalf of health workers.
Such responses clearly show the need to develop and integrate services so that hospitals and NGOs make the move to home caring, and dying, as easy as possible for both the families and the patients. Greater awareness about palliative care would not only relieve human suffering, but also give health-care workers a stronger feeling of being able to help people, even if they cannot save their lives.
Overwhelmingly the finding from this research was that the suffering caused by HIV/Aids is so great on a financial as well as emotional level that great relief can be brought by fairly basic interventions, such as increasing access to grants. Greater coordination between public organisations and NGOs could create a seamless welfare net for all people in need, but particularly for those coping with HIV/Aids. A great deal remains to be done to help people living with and dying from Aids, so that the impending loss of a loved one can be primarily an emotional trauma, rather than a cause to fear starvation.
This is the last in a series of three articles examining the findings of the survey and their implications