Research on AIDS-related bereavement in the Western context has paid little attention to the socio-economic impact of AIDS, probably because of the generous health and welfare support resources available to individuals infected and affected by HIV/AIDS in developed countries. Furthennore, until recently AIDS in these countries has largely affected gay men who have typically been educated, financially stable individuals with no dependents. With a rise in the number of low income people (mainly heterosexual people of colour) infected by HIV in the US, it will be interesting to see if future research identifies financial insecurity as a significant stressor influencing AIDS-related bereavement. I doubt that this will be an overarching issue for the bereaved however, because of the wealth of supportive AIDS services that exist at various levels in the US as well as the much higher per capita income of these individuals compared to those in developing countries (Demmer, 1999c). I have just completed a qualitative study of AIDS-related bereavement among 12 mainly low-income, minority women living in New York and New Jersey and a preliminary analysis supports my assumption (Demmer, manuscript in progress).
On the other hand, in South Africa many people affected by AIDS live in very impoverished circumstances which seem to worsen when a family member dies from AIDS. There is simply no comparison between being poor in the US and being poor in South Africa. The care and support services that exist in this country to help the poor who are most devastated by AIDS are comparatively meager, and the government is swamped by the demand for welfare support (Ewing, 2002).
Research has shown that bereavement distress is likely to be heightened when there are additional stresses such as financial hardship, unemployment, daily hassles and
physical health problems (Goldblum & Erickson, 1999). Most individuals in South Africa who are grieving AIDS-related deaths face a variety of stresses such as poverty, malnutrition, poor housing conditions, and limited formal support services, unlike those who are bereaved by AIDS in developed countries. These factors make the experience of AIDS-related bereavement in South Africa quite distinct from the West. As we shall see in this chapter, the primary focus for participants was not on addressing their emotional well-being, but rather it was about trying to survive on a daily basis - dealing with health issues, finding money for food, a place to live, or figuring out ways to send their children to school.
Living Conditions
Most participants in this study were very poor and struggled to support themselves and their families. This is not unusual when one realizes that AIDS primarily affects the poorest, most disadvantaged groups in this country (Mitton, 2000). The majority of the poor in South Africa have inadequate provision of water, sanitation, electricity, and more than one third of children less than five years of age are undernourished (South African Health Review, 1999; Gilbert& Walker, 2002b). According to Poku (2001), these social and economic problems "create a particular vulnerability to the devastating consequences of the epidemic" (p. 203). South Africa is one of the most unequal societies in the world (Johnson & Budlender, 2002; UNISA, 2000). Economic power is still heavily concentrated in the hands of whites who represent about 10% of the total population (Schneider & Fassin, 2002; Gilbert & Walker, 2002b). Approximately two-thirds of black households live in poverty compared to 6.7% of white households (Gilbert &
Walker,2002b).
A study by Cunnan and Maharaj (2000) illustrated the substandard living conditions of a substantial proportion of black South Africans. They studied the living conditions of 100 households in Canaan, an informal settlement situated in the Durban Metropolitan Region. I cite this study because several participants in my study lived in areas similar to the one described by Cunnan and Maharaj (2000). Here is what they found:
• The average monthly household income was R627;
• Twenty-three percent of respondents missed meals at least twice a week and 33%
said that they occasionally missed meals;
• There was no piped sewage and only one communal tap;
• Fourteen percent did not have any type oftoilet facilities (not even a pit latrine);
• Thirty-percent of the dwellings did not have windows;
• Fifty-five percent of households had an individual afflicted by an illness or disease, and the most common ones were tuberculosis, a sexually transmitted disease, and asthma;
• Ten percent had not taken their children to be immunized;
• Twenty-six percent experienced problems obtaining primary heath care and the main problem was not being able to afford medical fees or travel costs to the hospital or clinic.
For most participants (even the handful who were "better off' and earned R3,OOO or more per month), the constant battle to make ends meet was exhausting and made them despondent and fearful of the future. Zanele, who was probably the most impoverished of all participants, lived on a government grant of R340 a month for two of her children.
She cared for six children and an elderly mother. She worried about her children "each and every day." And she tearfully admitted that sometimes they "sleep without food."
Besta always put the needs of others before her, and she said that she wished she had money so that she could send her deceased brother's son to school. When pressed to identify what she would buy for herself if she had the money, she said that she didn't have a television or a radio and that the house was "empty". She was more concerned about being able to afford food, clothing, and school fees as these were more urgent needs for her family. Right now, she felt that there was nothing she could do about her situation and this caused her to be depressed. When asked what families needed the most when someone died of AIDS, she indicated that they needed food and more money for the people who come from all over for the funeral. Besta had problems with her blood pressure which she attributed to the constant worry about money. Her husband had been sick for some time and only recently began to do some part-time jobs, and he earned about RI,OOO a month which they all lived on. She said: "Most often, I worry about
money.. .it is always so little... I am a mother and I am supposed to be responsible but it seems like I'm not and the money is wasted on a few things and then it's gone." She took care of her three grandchildren who lived with her and her husband.
While Tuli did not have any dependents, she too was very despondent about her lack of money. She received a stipend of R800 per month for a volunteer position. She felt very vulnerable as she had no-one that she could rely on to help her. Her mother was retired and her younger sister was not working. She said: "At the end of the month, when I get my R800, nothing comes out of it... I have to put on clothes, I have to eat, I have to pay for my rent." Her rent on her flat was R500 per month, which left her with R300 to live on. She said that she ate bread at the place where she volunteered.
Nkosi relied on the kindness of church elders who had taken him in temporarily. His mother had died of AIDS and his father had deserted him and his brother. His brother was living elsewhere and he rarely saw him. For two years, an elderly relative had taken care of him but she was supporting so many other family members that he had to leave after a while. He possessed few belongings and was deeply disappointed as well as frustrated that he could not continue his secondary education. Yet, he felt optimistic about the future: "I think I will get married some day. I will live in a house. I'm very confident and I know I will make it."
Prudence was living with her parents, who were both unemployed and her mother brought in a bit of money by selling food. When asked how the three of them lived on virtually nothing, she said: "I do not know. What I noticed is that if you are a giving person, God tend to give you more. I do not know how it happens, but we do live and it is a happy home ... "
Even for Doris, who received a teacher's pension as well as a pension from her deceased husband, money was an issue. Even though she was certainly much better off than most of the participants, she wished that she could earn more money. She had her own flat in central Durban and her monthly income was R4,OOO. Two of her three daughters lived with her.
Impact ofthe Death/s on the Household
According to Warwick et al. (1998), it is at the household level that "the impact of HIV and AIDS is most seriously felt" (p. 313). AIDS impacts households over a long period of time, from the time the person becomes ill until way after their death (Gow and Desmond, 2002). Households tend to experience a longer period of depletion of resources when the household member has AIDS versus another illness, due to the protracted nature of the disease (Barnett, Whiteside & Desmond, 2001). According to Hope (2001):
Having a family member living with AIDS results in a significant decrease in household income and huge rises in medical care spending. Decreased income levels lead to a decrease in consumption patterns, diminished savings and, in some instances, debt. (p. 26)
In a recent study of HIV-infected adolescents and HIV-infected parents in the North- West Province of South Africa, 20 out of the 25 parents reported negative economic effects on the household stemming from their diagnosis (Strydom & Raath, 2005).
Thirteen participants in the current study made reference to increased economic hardship both before as well as after the death of a loved one. Typically, a family member became very ill and then lost hislher job, with the result that other members of the household had to scramble to find extra money to fill the void. However, this was usually not possible, and the household sank deeper into debt. Besta who had barely any household income coming in at the present time was dealing with her own health issues as well as that of her husband. She taken it upon herself to try and assist several other family members who were sick with HIV, but she was overwhelmed by how much they needed and how little she had to offer them. She said that she did not need much for herself but that she worried constantly about her family. The economic impact of having an HIV-infected member in a household has received some, though not enough, attention by researchers. Several studies have examined the impact of AIDS-related illness and death on households in developing countries but only a handful of studies have been done
in South Africa. Ewing (2002) argued that the costs to poor households affected by AIDS are often outstripped by the available resources. She added:
This needs to be better documented and given a much higher profile.
Otherwise it might appear to policymakers promoting home-based and community-based care as the only affordable option that these costs are, and will continue to be, absorbed. (p. 81)
Bachman and Booysen (2003) conducted a longitudinal study of 202 households with an HIV-infected member and a cohort of 202 unaffected households in one rural and one urban area in Free State Province. They indicated that at baseline, affected households tended to be larger, poorer and to have lower employment rates than unaffected households. Over a six month period, income and household expenditure declined more rapidly in affected households than in unaffected households. In a follow-up study of 404 households in Free State Province over 18 months, Bachmann and Booysen (2004) noted that expenditures in affected households continued to decline.
Since her brother died of AIDS, Besta had taken in his son and now she had to not only feed and clothe him, but find money for school fees. Her sense of hopelessness and despair was evident as she discussed this issue with me. She became quiet and teary, and her hands began to tremble. In Cross's (2001) study of poor, rural households in KwaZulu-Natal, the burden of incorporating children orphaned by AIDS into the household, without additional support, typically pushed the household over the edge. The education costs of the orphans were a particular drain on household finances, and this included school fees, transport to school, and school uniforms. With few options for digging their way out of poverty, households fell into a downward spiral where spending for basic needs was drastically curtailed and little money was available for food. Several participants indicated that they and their children regularly went without food. For example, Besta spoke about how it broke her heart that sometimes her children went to sleep without food.
In Ragani' s case, her elder brother had been the main breadwinner in the household and when he died and then his wife shortly afterward, she had to assume this role. Not
only did she have to support herself and her four nieces (one of whom had AIDS), but also her mother and occasionally her alcoholic brother who only worked sporadically.
The plight of households coping with the economic impact of losing a loved one to AIDS was dealt with by Gow and Desmond (2002). They surveyed 178 households in the Bergville area of KwaZulu-Natal, and found that there was a big difference between households that had experienced a death (presumably from AIDS) in the past 12 months and those that had not. The mean household income in affected households was R848 compared to R1,330 for unaffected households, meaning that incomes in affected households were 56% less.
Participants reported that while they had relied on neighbours for support on occasion, this was no longer an option for many of them; neighbours did not want anything to do with them because they were tired of helping out. As Cross (2001) observed, households cannot continually depend on "neighbourhood charity". Participants engaged in common survival strategies such as those reported by Gow and Desmond (2002); after already borrowing from family and friends, several participants had no choice but to sell off their few assets and to ration food. This is very worrisome for two reasons. First, many participants in this study were HIV-positive and several were quite ill, and not getting adequate nourishment was detrimental to their health. And, second, most participants had young children who were going hungry. It is also possible that several of the participants' children were HIV-positive, so their health too was being further compromised without adequate nutrition. When I asked Nomusa what advice she could give people who wished to help someone who had lost a loved one to AIDS, she replied:
"The most obvious thing is money."
What I found interesting was that none of the participants talked about the medical costs of caring for the deceased. Perhaps it was because they did not have to pay for medical costs, as it was either covered by insurance in one or two instances or the more likely situation was that the person was treated at a public hospital. The main concern seemed to be more about losing a source of income in the household when the person became too ill to work and the challenge of having one more mouth to feed. This contrasts with research done on AIDS impacted households in Free State Province where health care costs were found to be a significant drain on household resources (Bachman
& Booysen, 2003). Similarly, in their study of households impacted by AIDS in rural Tanzania, Ngalula, Urassa, Mwaluko, Isingo and Boerma (2002) noted that exorbitant medical costs exceeded the estimated per capita annual household income of the population in this region. Inboth of these studies, funeral costs were also identified as a major drain on households. This issue was not mentioned by participants in the current study, however. It appeared that a number of the deceased were covered by funeral policies. Only Besta remarked that when people die the family needed money to buy food for "the people who come in and wait for the funeral."
Participants described how families became splintered upon the death of an individual and family members were relocated to other households. Nkosi said: "When my mother passed away, my father decided to just leave us there." Although no longer a child (he was 21 at the time) Nkosi and his older brother were unemployed and had nothing, so they went to live with an aunt. However, this did not work out because of friction with her sons and Nkosi and his brother separated and went their own way, living wherever they could until they were no longer welcome. Azon had been separated from his wife and when she died his two daughters moved in with an aunt who he gave money to for their upbringing. Besta took in her brother's son after he died as there was no-one else in her family to care for him. Nornzamo lost two sisters to AIDS - leaving behind a total of seven children - and they were all taken in by one brother. InPhumzile's case, she had nowhere to go, after losing both her parents to AIDS. At the time, she was only 15 years old and she was left to care for her 11 year old sister. Hosegood, McGrath, Herbst and Timaeus (2004) reported that poorer households are vulnerable to dissolution as a result of AIDS mortality. They examined the impact of adult deaths on household dissolution and migration in a rural area of northern KwaZulu-Natal. Based on data collected on households between January 2000 and October 2002, they found that 21 % of households had at least one adult death. Households where one or more adult members died were four times more likely to dissolve during this time period.
Most participants in the current study discussed the difficulties of trying to keep their family together. Doris was grateful that she was able to keep her three children with her and raise them on her own after her husband died. For Ragani, being young, single and career focused, the prospect of raising three little girls, including the youngest one who
was very sick with AIDS, was daunting. But she could not bear the thought of separating her brother's three girls once their mother had died. She devoted her life to the girls.
Sadly, the sick child died three years later. Looking back, Ragani had no regrets about becoming the girls' "mother". Today, at age 36 years, she was starting to focus again on herself again and was pursing a degree in law.
Some participants experienced no change in their living arrangements after their loved one died. Prudence remained with her mother and stepfather after she lost her four month old baby. Bathokho, who lost a sister, continued living with her parents who were helping her to raise Bathokho's daughter now that she was too ill to do it herself.
Nomusa had lived with her brother and sister-in-law throughout her young daughter's illness and tolerated their hostility toward her and her child (both being HIV-positive).
After her daughter died at nine years of age, she continued living with them and raising her other daughter who also was HIV-positive. She had nowhere else to live, but she said that things were better now between her and her brother (probably because she was bringing a little bit of money into the household).
Burden Borne by Women
A dominant theme in my interviews was the central role women played in caring for the sick as well as dealing with the aftermath of a death. But this is not new information.
Barnett, Whiteside, and Desmond (2001) indicated that females in Africa are more harshly affected by the epidemic, as they "may be less well nourished or removed from school to save money for care costs of a sick parent, through to stigmatization on the death of a husband, and finally a lonely and impoverished widowhood" (p. 161). In a qualitative study of the impact of AIDS-related deaths on rural households in KwaZulu- Natal, Cross (2001) noted that most of the economic burden of household support was being carried by women. Women headed households were at great risk for sinking even deeper into poverty because of the shock of taking in children orphaned by AIDS as well as the fact that women had greater difficulty applying for assistance from bureaucratic organizations. Cross reported that women widowed by AIDS were often shortchanged by companies or government offices where their husbands had been employed when trying