Bereavement associated with AIDS has the potential to be more problematic than bereavement associated with other kinds of deaths because of several factors. Research has shown that individuals who grieve an AIDS-related death confront a host of issues that may complicate the grieving process, and these issues include the nature of the disease, the HIV status of the bereaved, multiple losses, and inadequate support due to the social stigma associated with AIDS (Dane & Miller, 1992; Nord, 1997; Mallinson, 1999b; Houseman & Pheifer, 1998; Catalan, 1995; Sherr, 1995; Maasen, 1998). These and other issues will be discussed in more detail.
A study by researchers in Australia comparing 28 individuals bereaved by AIDS- related deaths with 30 individuals bereaved by cancer-related deaths revealed that the AIDS bereaved group reported greater number of bereavements, more rejection from others, lower levels of social support, and greater reluctance to disclose the cause of death than the cancer bereaved group (Kelly et aI., 1996). Itis interesting that while there is a lot of literature about factors that influence bereavement due to AIDS, there are few empirical studies besides the one by Kelly et al. that have actually used a comparison group of individuals bereaved by a non-AIDS death. At best, researchers have simply compared their findings on AIDS-related bereavement with those of studies in the
literature on general bereavement (Folkman, Chesney, Collette, Boccellari, & Cooke, 1996). As Kelly et al pointed out, there is a need for more systematic comparisons "to assess differences in the experiences surrounding the death and afterward that are thought to increase the potential for psychological morbidity in an AIDS death (such as stigma, lower levels of social support, multiple losses), and to evaluate potential differences in acute and longer term grief responses and psychological morbidity" (p. 38).
The Nature ofAIDS-Related Illness and Death
Death due to AIDS is rarely a quick and peaceful process. The course of the disease is unpredictable and family members and other loved ones are forced to witness the horrifying deterioration of the patient. Additional characteristics of AIDS deaths that present challenges to family members and loved ones include the long period of anticipating the death and the young age of the patient (Martin& Dean, 1993b; Walker et aI., 1996, Sherr, 1995). Itis hard to imagine a more devastating cluster of opportunistic infections and cancers associated with a disease. An individual with AIDS is susceptible to a host of opportunistic infections that include wasting syndrome, chronic diarrhea, blindness, thrush, dementia and cancers such as lymphoma and Kaposi's sarcoma (Nord, 1997). The emotional toll on family members and other loved ones is enormous as they watch the patient endure and ultimately succumb to this disease (Brown & Powell-Cope, 1993). They must cope with shock, sadness, frustration, helplessness and sadness as they witness the physical and mental decline of their loved one (Worden, 1991; Stajduhar, 1997).
The widespread availability and use of ARV treatment in the US and elsewhere has altered the course of HIV/AIDS and helped transform it from a quick fatal disease to a more chronic disease (Deeks et aI, 1997; Porche, 1999; Karon, Fleming, Steketee & De Cock,2001). Sadly, this is not the case for most South Africans living with HIV/AIDS, due to the limited availability of ARV treatment. As I have watched people die from AIDS-related causes in South Africa, I am reminded of how it was years ago when I was working with AIDS patients in the US before ARV treatment became available. Images of South Africans dying of AIDS are like flashbacks from my past. I described this experience in an article called The Twilight Zone: AIDS in South Africa (Demmer, 2003).
Untimely Deaths
Most of those who die of AIDS in South Africa are younger than 40 years of age (Dorrington, Bourne, Bradshaw, Laubscher & Timaeus, 2001). It is always harder to accept the death of someone young and this is especially true for parents mourning the death of a child under 40 years of age (Kain, 1996). Besides parents, others who mourn the loss of a loved one to AIDS are also likely to be young, and most young people are not psychologically ready to deal with the death of peers - it is developmentally untimely.
There may be heightened awareness of personal mortality and increased death anxiety among friends and contemporaries (Worden, 1991; Nord, 1997). The high AIDS-related mortality rate has also exposed countless children in South Africa to the death of parents, family members and neighbours. We are only beginning to investigate the multidimensional impact of AIDS-related deaths on children.
Being HIV-Infected
A unique aspect of the AIDS epidemic is that many of those who are grieving an AIDS- related death are themselves HIV-infected and this places an extra burden on them as they mourn (Goldblum& Erickson, 1999). Their grief may be intermingled with feelings about their own health and the prospect of dying (Kain, 1996; Kelly et aI., 1996). As Sprang and McNeil (1995) noted, "spouses or significant others who lose a loved one to AIDS must face the possibility that they, too, may have been infected with the HIV virus and they fear the pain and suffering they have witnessed in their loved one" (p. 148).
However, empirical studies have not produced conclusive evidence that bereaved individuals who are themselves infected will exhibit substantially more distress soon after the death of their partners than bereaved individuals who are not infected (Summers et aI., 1995; Martin & Dean, 1993a; Rosengard & Folkman, 1997). In their study of bereaved HIV-infected and uninfected gay men in San Francisco, Folkman et al. (1996) found that both groups of men were extremely depressed during the months following the death of their partners to AIDS. Seven months after the death of the partner, the overall depressive mood of the uninfected men began to diminish but it remained high for the infected men. Neimeyer and Stewart (1998) suggested that more research was needed to investigate death anxiety in populations that are most affected by HIV/AIDS. So far it
seems that neither HIV status or bereavement experience will automatically result in increased death anxiety, and Niemeyer and Stewart criticized the assumption that "death anxieties increase in a simple and linear fashion as individuals shift from being at-risk, to seropositive but asymptomatic, to symptomatic with AIDS" (p. 583).
Guilt
It is not uncommon for bereaved individuals in general to experience guilt that they survived while their loved one did not, and to question whether they did enough for their loved one while they were alive (Dane & Miller, 1992; Nord, 1997). This is frequently the case among individuals bereaved due to AIDS. Kain (1996) noted that "survivors, particularly those who are HIV negative, may be steeped in survivor guilt, which prevents them from fully engaging in the bereavement process" (p. 220). In communities devastated by AIDS-related deaths, the bereaved may regularly question why they are still alive while their peers are not (Nord, 1997). The bereaved may also feel guilty for infecting their loved one and being responsible for causing their death (Worden, 1991).
Being a Caregiver
It is well documented that a high level of psychological distress is associated with caregiving in general. Caregivers may experience financial hardship, disruption of family life, depression, fatigue, sleep problems, and feeling hopeless about the future (Schulz, Visintainer & Williamson, 1990). Rosengard and Folkman (1997) studied suicidal ideation and bereavement among caregiving partners of men with AIDS in San Francisco and found that caregiving burdens and lack of social support were associated with high levels of suicidal ideation. Unlike other illnesses, AIDS forces caregivers to be secretive about the reason for the loved one's ill health, so they may receive little assistance with caregiving. The emotional and physical strain of caring for a person dying of AIDS can be overwhelming to say the least, and it can result in "survivor's fatigue" (Kain, 1996, p. 219). Grief may become exacerbated due to unresolved feelings of anger toward those who did not offer to help as well as to the deceased. Caregivers may feel anger and frustration that despite all their efforts, their loved one still died (Kain, 1996).
Stigma and Lack ofSupport
Probably the biggest factor that distinguishes AIDS-related bereavement from other types of bereavement is the social stigma that is attached to AIDS. Since the first cases were reported, AIDS has been regarded throughout the world as a highly stigmatized disease.
Brown, Macintyre and Trujillo (2004) pointed out that "one of the most surprising elements of AIDS stigma is its ubiquitous nature even where the epidemic is widespread and affecting so many people, such as in sub-Saharan Africa" (p. 49). They commented that AIDS stigma is caused by "fear of illness, fear of contagion, and fear of death" (p.
50). Family, friends, and health care workers can be stigmatized by virtue of association with someone who has HIV/AIDS and this is called "secondary stigma" (Brown, Macintyre and Trujillo, 2003, p. 51). AIDS stigma is manifested in several ways including silence, shame, denial, fear, anger and violence.
South Africa can be a hostile place for people who publicly acknowledge their HIV status. Take the example of Gugu Dlamini, a 36-year old female AIDS activist, who was beaten to death at the end of 1998 in the township of KwaMashu by a mob who accused her of degrading her community by revealing her HIV positive status. This barbaric killing prompted concerns that those affected by AIDS would be driven further underground ("Widespread horror over killing", 1999). Five years later, another incident occurred that exposed the extreme nature of AIDS-related stigma in South Africa. In December 2003, Lorna Mlosana, a trainee educator with the Treatment Action Campaign, South Africa's largest AIDS activist group, was gang-raped and when she revealed that she was HIV-infected, she was beaten to death by her furious attackers ("AIDS activist's killing", 2003). The stigma and silence surrounding AIDS in South Africa became the theme of the 13th International AIDS Conference that was held in Durban in July 2000 and the title of the conference was appropriately calledBreaking the Silence.
Multiple Loss
The professional literature on AIDS-related bereavement has focused substantial attention on the phenomenon of multiple AIDS-related loss, due to the high number of AIDS-related deaths within gay communities in developed countries. Nord (1997) wrote a comprehensive text on this issue titled Multiple AIDS-Related Loss: A Handbook for
Understanding and Surviving a Perpetual Fall. But the text is mostly limited to bereaved gay men living in the US context. The scale of AIDS-related loss in South Africa is unprecedented in the world. Considering the high prevalence of AIDS-related deaths in South Africa, it is not uncommon for individuals to lose several members of their family to AIDS, in addition to partners, friends and neighbours. However, we do not know much about this phenomenon within the South African context and research is urgently needed to assess the extent and effects of multiple AIDS-related deaths on individuals and communities in this country.
In the US and several other developed countries, a number of studies have shown that bereaved gay men have experienced high numbers of AIDS-related deaths within their social networks. In an early study of gay men in New York City, it was found that respondents had lost on average 6.7 close people to AIDS (Dean, Hall & Martin, 1988).
In 1990, the annual incidence of bereavement in this community sample rose to 30%.
Among a cohort of gay men participating in a longitudinal HIV research program in San Diego, California, 60% reported an AIDS loss within the previous 12 months, and 43%
of this bereaved cohort reported multiple losses within this period (Summers et aI., 1995).
In South Africa, it can be safely assumed that far more people overall have experienced multiple AIDS-related loss compared to the relatively small homosexual population in the US.
AIDS has been termed a disease of loss (Nord, 1997). Family members experience various losses throughout the course of the patient's illness, including the loss of the person they once knew as he or she declines (Demmer, 2002a). Other losses include hopes and dreams for the future, feeling of being in control and predictability of life events, physical intimacy, social, financial, and emotional support (Walker et aI., 1996).
Those who are bereaved in South Africa are subjected to ongoing loss, meaning that they are forced to witness the deaths of a number of people to AIDS within their social network. The phrase "bereavement overload" was coined by Kastenbaum (1977) to describe the experience of elderly people who lose many of their friends in a relatively short period of time, and it has been applied to those grieving multiple AIDS-related deaths as well (Bigelow & Hollinger, 1996; Nord, 1997). In communities devastated by AIDS, there is "a never-ending cycle of perpetual grieving" (Cho and Cassidy, 1994, p.
275). The constant onslaught of AIDS-related deaths does not allow the bereaved individual enough time to grieve a loss before another death occurs, and this complicates the grieving process. Each time a death occurs it reminds the individual of a previous loss, especially when previous losses are unresolved (Nord, 1997; Walker et aI., 1996).
As a result, bereaved individuals may become "emotionally overwhelmed, physically exhausted, or spiritually demoralized" (Mallinson, 1999, p. 167).
Nord (1996) indicated that individuals who experience multiple AIDS-related loss may protect themselves by deadening the pain or going into denial (psychic numbing).
There may be changes in personality and the following emotions may dominate:
pessimism, rage, disillusionment, despair, and powerlessness. Furthermore, multiple AIDS-related loss may result in self-destructive behaviors such as alcohol and drug use, suicide and engaging in high-risk sex behaviors to purposely become infected with HIV (Villa & Demmer, 2005). Multiple bereavement episodes may lead to the development of post-traumatic stress disorder or major depressive disorder (Martin, 1988). To address the plight of those grieving multiple AIDS-related deaths, Biller and Rice (1990) stressed that "participants need to tell their stories over and over again" (p. 287). However, this is not always feasible in reality. In the larger community, those bereaved by AIDS are often forced to be silent. They may feel isolated because the larger community does not want to know their feelings. Furthermore, denying one's grief may lead to shame and guilt over the loss, the relationship, and oneself.
Conclusion
The HIV/AIDS crisis in South Africa has been described as "a medical holocaust"
because of "inadequate health care, poor education and social stigma" ("Pseudoscience in South Africa", 2000, p. A28). The high number of AIDS-related deaths in South Africa has created a parallel epidemic of mourners who grieve the loss of loved ones to AIDS.
Although AIDS-related bereavement has received substantial attention in the West we
,
know very little about the bereavement experiences of people in South Africa, a country which has been impacted by AIDS-related losses on a scale never witnessed before in the history of the HIV/AIDS epidemic. Most research on AIDS-related bereavement has been conducted on white, middle class gay men in the West, and there are obvious
limitations in applying knowledge from this context to a vastly different one in South Africa. However, this research can heighten our awareness of issues that could affect mournersinthe local context. Now that the background literature has been reviewed, we turn our attention to the next section which deals with the methodology of the study.
Chapter Five describes the research methodology and Chapter Six presents profiles of the participants in the study.