As the person grieves, there is a tendency for events of the past to be recycled in the present (Dane & Miller, 1992). This can include thoughts about unresolved issues in the relationship or doubts about whether the person did everything possible medically for the deceased. Many of the bereaved in South Africa are confronted with the reality that their loved ones died because they did not have access to ARV treatment that is relatively easy to obtain by infected people in developed countries. According to the latest UNAIDS report on the epidemic, of the approximately 25-28 million people living with HIV/AIDS
in Sub-Saharan Africa, only a paltry 150,000 people had access to ARV treatment as of June 2004 (UNAIDS, 2004). Watt and Burnouf (2002) chastised the medical establishment for being self-congratulatory about advances in medical treatment for AIDS when so many millions of people worldwide cannot access these treatments:
"Living with AIDS" is the politically correct euphemism. Dying with potentially manageable HIV infection is the horrible reality. Can there be a more shameful medical emergency than 30 million patients' urgently requiring life-prolonging therapy and not getting it? (p. 710)
Itis interesting that not one participant voiced any bitterness that his or her loved one had died before ARVs became available in South Africa which could have extended their lives. This is contrary to anecdotal accounts among the bereaved in the US (Demmer, 2001a) who felt cheated that their loved ones did not live long enough to benefit from ARVs which became available in 1996. Only Nomusa commented on the issue of ARVs but her perspective was slightly different. She voiced relief that her deceased daughter was not around to be denied access to ARVs while others had access to them: "Thank God she passed away before she could get help from ARVs. I think that would have been the most terrible, painful thing - that help is here but she cannot get it." Incidentally, Nomusa's other five year old daughter was currently receiving ARV treatment.
Because it was only at the last moment that most participants realized that their loved one had AIDS and/or was critically ill, only a few of them were actually involved in caring for the person or had experience with the type of medical treatment they had received. So, most participants did not have much to say about the medical care for their loved one. There were a few exceptions however, such as Nomusa, Prudence and Ragani, who had lost children to AIDS. Nomusa was grateful for the care the hospital staff had given her daughter. She commented: "I know that she got the best care. She ended up being a well known person in the hospital. I would see everything they were doing for her. I was 100 percent satisfied. They did everything they could." Ragani and Prudence had mixed feelings, on the other hand. This is what Ragani said:
I had a bit of a problem in terms of race because Shanni was the only Indian child on the ward ... When I went there, I had to sign my name in a book... You were supposed to be seen as per when you signed in the book.
I noticed several times I waited much longer than the others who had signed in after me. It was a racial thing. If you were Indian, then you wait. One day, I just lost my temper. Yes, I have had bad experiences!
But Ragani was very happy with her niece's primary doctor:
This particular doctor. .. he had the most beautiful blue eyes and Shanni looked forward to seeing her blue-eyed doctor. He was very good to her.
He would laugh and joke with her and make her comfortable first. He shared a very good relationship with Shanni. He was caring.
Prudence too noted how the quality of treatment varied between institutions and medical professionals:
You know, everywhere, in every different place, every different institutions like hospitals, you'll find different treatment - especially in public and private hospitals - it is very different. The staff in the baby's ward ... was very nice. But here are a few people that they didn't want to be affected by our children... Some nurses can't even touch a baby... Some were nice and understanding. Some were awful."
When asked how she would rate her experience with medical personnel during the four months her baby lived, she replied: "I can say 70 percent okay. People are different.
Some doctors are... more comforting than nurses. They are very understanding and they are very caring, if you compare them to nurses." But she remembered one nurse who had been comforting: "There was always a nurse who always came to me and said I am praying with you and your son will be fine ... She always had a positive attitude and
positive stories to tell. She was very nice." Sibusiso also had good things to say about the medical personnel who treated his brother:
The staff was very supportive... The medical doctors were so fond of him.
The doctors gave me plenty of time with Patrick in the hospital. They were very kind. Itdepends on how you approach them, even if they have strict visiting hours.
Several participants thought that the medical staff did the best they could, considering their loved one was in the "last stage", as Monica put it. On the other hand, some participants had quite negative experiences. Felicity commented that she had heard "that when people are HIV-positive, they just ignore them." For Azon, the hospital that had treated his wife was "not a good one at all. Everyone who goes there doesn't come back." Zanele complained:
They treat patients very bad. Sometimes you go to the hospital and are very sick and you're sitting there and they tell you to just go home. They just don't care....Part ofthe reason is because some think you're a burden.
Since the mid-1980s, there has been a steady stream of research studies, most of them conducted in the US, examining attitudes of health care workers toward people with HIV/AIDS. Several comprehensive reviews of the literature on this topic (Horsman &
Sheeran, 1995; Bennett, Miller, & Ross, 1995; Valimaki, Suominen,& Peate, 1998) have shown that negative attitudes by health care workers are prevalent. The main concerns that health care workers usually have are discomfort working with stigmatized groups (such as gay men or drug users), fears of contagion, attributions of blame, and the stress of working with patients who were terminally ill. Although the AIDS landscape has changed dramatically in the last 10 years within developed countries, health care workers continue to be vulnerable to stress and burnout, and this together with negative attitudes, can compromise patient care (Demmer, 2004b). Insofar as Africa is concerned, we have only a small amount of literature on this topic but hopefully it will expand in the future.
A couple of local studies, selected at random, indicate that some health care workers definitely display discriminatory attitudes toward patients with HIV/AIDS. Furthermore, many workers are overwhelmed and feel unprepared to handle the challenges associated with HIV/AIDS care (Adelekan & Joyalemi, 1995; Strydom, 2002; Moore, 2001;
Fransman, McCulloch, Lavies, & Hussey, 2000; Smit, 2005).
There is no doubt that there are many dedicated medical professionals in South Africa who care for patients with HIV/AIDS, however the health care system is ill equipped to handle the enormity of the HIV/AIDS crisis. Tremendous burdens are being placed on the public health care system (Walker, Reid and Comell, 2004). Some public hospitals have had to turn patients away, and physicians have been forced to make difficult decisions about limiting treatment and deciding who to save (Henderson, 2000b; Walker,
Reid & Comell, 2004). This desperate situation was summed up by Karen Michael, an
AIDS researcher in Durban: "We can't afford to spend money on people who are going to die" (Henderson, 2000b, p. 20).
There are still huge disparities in health care after Apartheid and movement toward a national health service has been slow (Benatar, 2004). Walker, Reid and Comell (2004, p. 73) commented that "health services are most available to the people who need them least. Those who need health care the most have inadequate access to it."
AIDS has exacted a devastating toll among South African health workers as well.
Based on a nation-wide representative sample of 721 health workers employed in public and private health facilities in four provinces, Shisana, Hall, Maluleke, Chauveau, and Schwabe (2004) reported that approximately 15.7% were living with HIV/AIDS in 2002.
Professional health workers had aHN prevalence of 13.7% and non-professional health workers had a prevalence of 20.3%. Rehle and Shisana (2003) predicted a bleak future for the health care system in South Africa as a result of the AIDS epidemic:
.. .it is expected that that the number of people seeking care is likely to increase substantially, "crowding out" those who suffer from non-AIDS related illnesses. As more AIDS patients need care, staff are likely to experience "burnout", low morale, and increased absenteeism. The health care workers, as part of the community, might also become infected and
develop HIV/AIDS-related illness, which will render them unable to provide health care to those who fall victim to the disease. This may result in a non-functional health care system... (p. 7)