Sub-theme: Fear of death

Most participants had a preconceived idea that an HIV positive diagnosis meant death and if they test positive they are going to die. One participant said:

“If I test positive, I know I am going to die so what is the point of getting tested”.

Their fear of death might be based on the slow, degrading and painful death that they had witnessed from their parents and other siblings. All the participants had known of someone in their family or community who had died of AIDS.

There is a widespread belief that children do not take death seriously and therefore are not concerned about it (Dane, 1994:23). People believe children should be protected from death itself. Perhaps this belief that children should be protected from the experience of death sustains the belief that death does not trouble children (Killian & Perrot, 1994:10).

However, Kubler Ross (1970:158) argues that although adolescents generally find it difficult to deal with the developmental stage, there is not much difference between the way adults and adolescents experience death. Holland (2001:50) agrees with this point stating that when children are 12 years old they have the same understanding of death close to that of adults. “Their cognitive (intellectual) understanding of death is that of an adult” (Mallmann, 2003:35).

“If one parent is infected with HIV it means that his or her partner will probably also be infected by means of unprotected sexual intercourse. This then results in both parents getting sick and eventually dying. This means that, unlike orphans who have lost a parent due to an accident or non-infectious disease like cancer, AIDS orphans are often confronted with the disease and death of both parents and losing a parent to AIDS and that increases their fears of death” (Mallmann, 2003:1).

According to Mallmann (2003:17) “when a parent dies, it is natural for a child to experience feelings of bereavement like sadness, depression or anger. Grieving is the word used to describe the thoughts and feelings that people have when someone has died”. Kubler Ross (1969) agrees with the above mentioned author and states that when receiving news about death, it is normal for people to go through five stages of grief namely, denial, anger, bargaining, depression and acceptance.

However, according to this theory people do not always experience all of the five grief cycle stages. Some stages might be revisited while others might not be experienced at all.

The theory further argues that people are different and therefore each and every one has to pass through their own individual journey of coming to terms with death and bereavement, after which there is generally an acceptance of reality, which then enables the person to cope.

Tilley (1990) adds on, saying that people can react either positively or negatively on receiving death. Those who respond negatively may experience the above mentioned feelings of bereavement. According to Kubler Ross (1969) initially upon hearing death, a person reacts with a shock. Shock is an immediate reaction to something unexpected and it is a normal feeling that people undergo but it is not experienced by everyone. This is evident in this study as some responses of the participants attest to this:

“I was very shocked and did not believe it”.

“I was very shocked because I never thought my father could be HIV positive”.

Kubler Ross (1969) considers denial and shock as normal reactions to loss, as long as they are not prolonged. The next stage that people go through is anger. As the bereaved person comes out of denial they often become angry as they recognize their lack of control over the loss. According to Chapman (2006) in Kubler Ross (1969) anger can

manifest in different ways. People dealing with emotional upset can be angry with themselves, and/or with others, especially those close to them.

The third stage is bargaining. They begin to bargain with whatever God they believe in.

In this study AIDS orphans prayed that God does not take their parents but when they realized that this was pointless, they went through a period of depression.

According to Tilley (1990) depression is a medical illness which affects one’s mood, body, thoughts and feelings. “Depression is characterised by prolonged periods of any of the following; sadness and crying, feeling low or despairing, feelings of guilt and lowered self-esteem, a tendency to see only negative things etc”. In this study one participant experienced some kind of depression due to her mother’s death and he expressed his feelings as follows:

“When my mother died, my heart was sore, I used to cry a lot”.

From the above quotation it is evident that the participant has at least begun to accept the reality with emotional attachment.

The final stage is acceptance. Finally, a bereaved person accepts the loss. Although it was not that easy, some participants said they had to accept the death of their parents, as endorsed in the following:

“I stopped crying and granny told me to be strong”.

“After my mother’s death I did not feel bad because I felt that had she not tell us about her status, it would have stressed her a lot and stress could have led to her death”.

One participant stated that he would not have been able to concentrate at school if her mother had disclosed her HIV positive status before she died but later the grandmother told the participant that his mother died of AIDS. When asked what happened to his

concentration after the grandmother told him about his mother’s status, the participant said:

“At that time I was able to concentrate because she was already dead and there was really nothing that I could do”.

The statement above shows that although it is not easy to accept death of a loved one, finally people do come to terms with death and accept it.

From this study it becomes clear that there is a need for HIV positive parents to be provided with knowledge about how to prepare their children for their death. This can be done through workshops. Information provided at the workshop can include ways that parents can arrange with relatives to take care of their children, by drawing a will to provide for their children and by talking to their children about death. This can help AIDS orphans to accept their parents’ death quicker.

Mallmann (2003:14) is of the opinion that children who have not been prepared for the death of their parents are likely to be traumatized thus react with shock and get confused.

She further states that it takes longer for the child to understand what has happened and this makes the grieving process more complicated and may cause nightmares, hyperactivity or outburst of anger.