Fear

‘We HIV positive people are stigmatised, we are insulted, we are beaten’ said a protestor. ‘Our people hate us’.

From this, it can be concluded that the real or imagined fear of being harmed physically when one discloses one’s HIV positive status and the accompanying stigma exacerbate feelings of isolation and loneliness for PWA. HIV stigma has a devastating impact on selfhood and adds to the illness experience of AIDS. Furthermore, this fear of being harmed emotionally or physically helps in driving the epidemic and is “proven to be perhaps the most difficult obstacle to effective HIV prevention” (UNAIDS/WHO, 2005:

10).

I felt very anxious when I thought of AIDS because of the suffering. Physically, it is a frightening disease. I did feel a degree of fear thinking about it … It did worry me, more so than the cancer, because with AIDS there is that notable physical suffering. The image of death has been with me for a while … I won’t say that I was happy about it but I had come to terms with death. I am dying. The dying aspect was of less importance to me. The evil, the sin [referring to stigma attached to AIDS], the why does God do this to me … That God had abandoned me. The punishment – it is what society and the church tells you.

Jan, 71 years old, in Cardo, 1999: 212-213

Another participant in the same study echoes these sentiments:

Thinking about AIDS and dying horribly made me feel scared … I thought of death. I knew that when a person has AIDS they die horribly.

Mercy, 27 years old, in Cardo, 1999: 217

Dying parents have fears beyond their impending death. Parents’ fear for the welfare of their children appears to be a common theme when reviewing qualitative studies on HIV/AIDS. Nearly all individuals with this predicament are fearful of the impact their death will have on their children (e.g. Breslin, 2003: 11-12; Cardo, 1999:

163, 216; Russel & Schneider, 2000:15). In sub-Saharan Africa, this includes the welfare of elderly parents, especially grandmothers who are burdened with care-giving responsibilities (UNAIDS, 2004; UNAIDS/UNFPA/UNIFEM, 2004). A study commissioned by the WHO (2002) on Impact of AIDS on older people in Africa:

Zimbabwe case study, identifies factors that negatively impact on the care-giving ability of older people and are a source of great trepidation:

The financial burden of care, the physical demands of care-giving, a lack of knowledge about AIDS-related care, a lack of medicine, the mental and psychological stress of care-giving, a lack of food and other basic needs, poor access to health care for the sick as well as for older care-givers, socio-cultural issues like stigma, abuse, abandonment and neglect … Apart from this, care- givers also had to personally deal with their own fears of contracting the disease, as well as the frustrations inherent in performing the daily chores of cleansing, washing and feeding the PWA and orphans, with no obvious external assistance.

WHO, 2002: 14-15

Similarly Russel & Schneider (2000), in a study A rapid appraisal of community- based HIV/AIDS care and support programs in South Africa, found that both infected parents and providers are concerned about the children and what will happen to them when their parents die. This is epitomised in the following lament of a male participant:

You know right now I can contribute to my family. I get the disability grant of R450 per month, so I can buy some mealies, or I will go and ask people for food to feed my family, but soon I will die and there will be no more money. My wife is shy. She will not be able to go out and ask for food. I have a son, they will starve, my wife will die and where will my son go? Probably to a relative who will treat him like a slave, speak roughly to him. They may not share food and when will he study? What am I going to do?

Russel & Schneider, 2000: 15

A 62-year-old woman, looking after three orphaned children in Bulawayo, Zimbabwe, expresses a similar fear:

I am so afraid of what the future has in store for these orphans. If I were to die and leave them, there would be no-one to look after them.

WHO, 2002: 9

The reality of the above is shown in the growing number of child-headed households in sub-Saharan Africa. For example, the Nelson Mandela/HSRC (2005: 113) national HIV/AIDS prevalence survey reports a doubling of child-headed households, from 1.5%

in 2002 (NelsonMandela/HSRC, 2002) to 2.6% in the current study. According to this, it means that 213 859 orphaned children in the South African population are heads of households (NelsonMandela/HSRC, 2005: 113). These findings are similar to other sub- Saharan African national surveys on child-headed families. According to current estimates, 12 million children in sub-Saharan Africa live without parents (UNAIDS/WHO, 2005: 17-30; UNICEF, 2005: 6).

The fear of death of a parent or principal care-giver (grandmother) is mutually shared by the children. This is a universal fear whether parents have AIDS or not. For example, research findings in six countries – Australia, Canada, Egypt, Japan, the Philippines and the United States of America – show how children are remarkably alike

in the things they are afraid of. The study showed that the primary fear among children in each country was the same: “the fear of losing a parent” (Yamamoto, et al. 1987 in Papalia & Olds, 1992: 299). This finding is echoed in studies on children with a parent/s dying of AIDS. For example, Breslin (2003) in her study A research study on home based care in Mozambique, found that children (aged 8-12) expressed worry when one of their parents fell sick and they talked about the insecurity surrounding their future. One of them said: “When my father became sick, I imagined he would die and we would suffer”.

Another child stated: “I thought my father would marry another woman, and we wouldn’t be taken care of well”. This child was talking about his sick mother and her looming death.

The above review shows how HIV/AIDS impacts on the families across generations. AIDS interferes with a parent's ability to provide adequately for children, both physically and emotionally. Due to illness or death of a parent, primary care responsibilities fall on extended family members. In most instances, grandmothers become the primary care-givers for multiple children (Burt, 2003; Ferreira, 2004: 2-3;

WHO, 2002). In addition the vulnerability of children affected by AIDS starts well before the death of a parent. Children affected by AIDS will often experience many negative changes in their lives and can start to suffer physical and emotional neglect, long before the death of the parent or care-giver (Breslin, 2003: 9-16; Germann, 2004). The emotions of anger, sadness, fear and shame discussed above are not exclusive to illness experiences or care-giving experiences, they are ubiquitous when compounded with poverty, as the stories of the six women in this study shows.