Proposal to Cotlands (Gauteng) for Psychological Services and Research

Below is my informal proposal to provide assessment, research and training services to Cotlands beginning next year:

Background

The HIV/AIDS pandemic has perpetuated its most devastating effects upon the poor in South Africa and in other developing countries across the world. The highest death rates occur among employable adults, decimating the income-generating members of communities, leading to lower tax income to support community infrastructures, such as education and the now over utilized health services. This cycle of AIDS and poverty has meant that South Africa has dropped dramatically over the course of the last five year on the scale of economic development, creating greater numbers of poor and people vulnerable to the virus and without adequate services. As the greatest number of infections and deaths are adults ages 20-35, the physical, emotional and cognitive impacts of HIV/AIDS on infants and children has reached a tragic scale; more and more poor households are headed by grandmothers and children who have, respectively, lost their children and parents to AIDS-related diseases. In addition to suffering the stresses of multiple losses, upheaval of their family systems, inadequate care from ill-prepared or frail caregivers, and removal from their homes, infants have been infected with the virus by their HIV+ mothers. Before ART, infection was an early death sentence for a child; with treatment, these children still face the stresses above, and many will grow up in institutional settings.
Cotlands in Gauteng has taken steps to ameliorate the suffering of children from Johannesburg’s poorest communities, for example, by:

1. Being the first in the country to offer palliative care to children with AIDS in their Hospice program, which was expanded to include treatment with antiretroviral medications when they became available;

2. Providing sanctuary for infants up to age 14 who have been orphaned or whose parent are unable to care for them, given both the complexities of antiretroviral treatment regimens and nutritional needs;

3. Providing Home Based Care (HBC) in poor communities as well as a community center for support group meetings and counseling for the caregivers, income generating projects, and material aid (food, clothing, household equipment, etc.). Food gardens are currently being developed, both in some individual grandmothers’ yards and, soon, on land offered by a secondary school adjacent to the center.

HBC employs care workers from the local communities to supervise and support caregivers in each child’s medical treatment and wellness. Care workers visit the homes of their clients, provide instruction in the child’s medical care, insure that children get to their clinic appointments and are receiving their ART correctly, help mothers and grandmothers apply for social grants, and run support groups for caregivers. The HBC program also tries to remediate the children’s developmental delays associated with the infection by providing “stimulation programmes.” Outcome data on the impact of HBC’s psychosocial and other interventions has apparently not been collected; however, it is likely that stimulation alone would ameliorate the psychological consequences on HBC’s HIV+ children of AIDS and extreme poverty. Cotlands would not be alone in prioritizing physical health, economic aid, education, and caregiver support group and saving the mental health of children and their caregivers for later.

South African HIV+ children’s mental health and cognitive developmental needs have historically been neglected in the child development research and in most intervention programs. South Africa is not the only developing country lacking national psychoeducational data. Most child development research and programming has been done with U.S. and European samples, and psychologists in western nations have not concerned themselves with internationalizing their theories and studies, particularly in those parts of the globe with the greatest needs for help and understanding. In the international and national responses to the HIV/AIDS pandemic in southern Africa, “psychological” has, until recently, been considered a less important or less acute problem than HIV/AIDS affected children’s nutrition and shelter, as if, Linda Richter (2003) suggests, their “need for food and shelter is greater than their need to feel loved by others and to respect themselves” (p. 245). The 2007 HIV and AIDS and STI Strategic Plan for South Africa, 2007-2011, makes no mention of insuring that children’s conditions actively contribute to rather than undermine their emotional and social development, and by extension their academic achievement and potential to contribute to South African society. This oversight confirms the relative neglect of orphans’ and vulnerable children’s mental health and achievement by funders and policy makers, at least in South Africa. National policies that support multifaceted treatments in the services of children’s development are crucial components of meeting the first and second UN Millennium Development Goals: (a) eradication of extreme poverty and hunger, and (b) insuring that all children complete primary schooling.

In 2007, the international problem of poverty’s negative impact on child development has come to the forefront of development concerns, supported by research reviews in the Lancet series, Early Childhood Development: The Global Challenge. Nonetheless, there is very little research on the psychological effects of HIV/AIDS and poverty on South Africa’s (and other severely affected nations’) children, including their cognitive functions, academic achievement, and mental health. Further, there is a need for “globally accepted measurements and indicators for child development that can be adapted across countries for monitoring, planning, and assessment” (Engle, et al., 2007).

Proposed Services

Cotlands Outreach Manager, Busi Nkosi, has been observing the distressing developmental and academic delays among the approximately 100 HIV+ children in the HBC program, and intends to make the children’s educational needs the next target for HBC intervention. I have also spoken to staff about and observed the psychological delays in children in Cotlands’ Educare, Sanctuary and Hospice: severe language delays are common as are interpersonal and behavioral problems grounded in early neglect, losses, and attachment failures. Because Cotlands already has begun to assess the older children’s learning strengths and weaknesses, Busi is advocating for the children of HBC to also be assessed.

There is certainly urgency for cognitive and educational assessments for school age children, which could support advocacy efforts for appropriate educational interventions and support. Yet, the relationship between poverty, remedial developmental delay, and academic achievement cries out for the research, adequate assessment measures and early childhood interventions. Busi and I proposed that I, and 1-3 doctoral-level clinical psychology students who may accompany me, administer baseline developmental and psychological (neuropsychological, cognitive and social-emotional) assessments for these children, beginning in either January or August 2009. One purpose is to have data about the HBC’s children’s current (and baseline) abilities. With that knowledge, intervention programming could be founded on the children’s current estimated development and abilities. Another purpose is to develop ecologically valid measures (with potential for global applications) that could function as program evaluation measures. A third purpose would be to adapt measures that could be administered by non-professional staff and/or caregivers in the service of longitudinal records of children’s development.

With Cotlands’ endorsement of a HBC children’s assessment project administered by me and a couple supervisees, I can then try to acquire grant funding to support our expenses (airfares, testing materials, and local transportation). I would like to propose biennial visits, each to occur in January and August, so that we can serve a greater number of HBC children. The offering of these proposed services would be contingent on acquiring adequate grant funding.
I would also like to request permission from Cotlands to do research on the assessment project; this information would make an important contribution to the psychological literature on vulnerable children with HIV/AIDS. The data would also provide a foundation for the HBC program to develop intervention projects and then evaluate the outcomes of interventions. Confidentiality would be maintained for all participants. With preliminary support, I will develop a research proposal for Cotlands Institutional Review Board.

Susan E. Hawes, PhD
Professor, Clinical Psychology
Antioch University New England
40 Avon Street
Keene, NH 03431 USA
shawes@antiochne.edu

References

Engle, Patrice L., Black, Maureen M., Behrman, Jere R., Cabral de Mello, Meena, Gertler, Paul J., Kapiriri, Lydia, Martorell, Reynaldo, Young, Mary Eming, and the International Child Development Steering Group (2007). Strategies to avoid the loss of developmental potential in more than 200 million children in the developing world. The Lancet, 369, 229-42.

Grantham-McGregor, Sally, Cheung, Yin Bun, Cueto, Santiago, Glenwwe, Paul, Richter, Linda, Strupp, Barbara, and the International Child Development Steering Group, (2007). Developmental potential in the first 5 years for children in developing countries. The Lancet, 369, 60-70.

International HIV/AIDS ALLIANCE (2006). Young Children and HIV: Strengthening Family and Community Support (Building Blocks: Africa-wide briefing notes.

Jolly, Richard (2007). Early childhood development: The global challenge, The Lancet, 369, 8-9.

Rochat, T. & Hough, A. (2007). Enhancing Resilience in Children Affected by AIDS: Children’s Views and Experiences of Resilience Enhancing Family and Community Practices (published by the Human Sciences Research Council in South Africa).

Singhal, Arvind & Howard, W. Stephen (Eds.) (2003). The children of Africa confront AIDS: From vulnerability to possibility. Athens, Ohio: Ohio University Research in International Studies, Africa Series No. 80.

Walker, Susan P., Wachs, Theodore D., Gardener, Julie Meeks, Lozoff, Betsy, Wasserman, Gail A., Pollitt, Ernesto, Carter, Julie A., and the International Child Development Steering Group (2007). Child development risk factors for adverse outcomes in developing countries. The Lancet, 369, 145-57.

July 27: Sunday in Turffontein & Orphans' OT

Today I worked alone all day reading drafts from home. So, at about 4:30 pm, I walked down to pick up some chicken, veggies, and fizzy water from the Quick SPAR, which is the closest grocery store to Cotlands in Turffontein. There are actually other stores in the neighborhood, but I’ve never asked why we only shop at SPAR. As today was Sunday, only SPAR and the fruit and vegetable store across the road were open. The walk to the SPAR begins on our street, Ferreira (named after a gold speculator who discovered gold on the Turrfontein Farm back in the 1870s) to the large street at the end of the block. I have wanted to photograph this area, but have been afraid of being robbed of my camera. At the corner, there’s an abandoned building which often has shattered glass scattered on the ground and sidewalk. There is a wide stretch of what would be grass between the spotty sidewalk and the street; it’s got some patches of ‘grass’, and consists of the red-orange dirt that is everywhere. Across the street, there is an awning where one or two men sell haircuts and shaves. I think this was here last year, without the cover. There’s an open doorway next to the barber that leads into a small room packed with fruit, vegetables, and selected necessities; one of the little "Spaza Shops" that can be found on almost every block (There’s also one along the walk to Cotlands from my apartment, but it’s bigger and in the evenings sells things through an iron grating. An even larger market is further down the road, situated on a classy corner spot). Spaza shops are black South African's retail opportunities, and are as ubiquitous as the thousands of minute fruit or vegetable sellers scattered throughout the townships.

As I walk to the QuickSPAR, I pass many other pedestrians and am unsure whether to smile or to avoid eye contact; I do a little of both. The pharmacy is in the block before the main intersection and the street that holds the SPAR. All over-the-counter and prescription medications are sold at pharmacies, even vitamins. The main street is a divided road, and its broad sidewalks are always bustling with both pedestrians and cars. Next to SPAR is an internet place that also sells some technology and a liquor store, where one can buy wine, beer & liquors. SPAR sells wine, but only very sweet varieties, which seem to be favored by the locals. Across the street from SPAR is a vegetable market, a clothing store and others locally-run outlets; a constant braai is in process in front of these shops, which sends smoke and the scents of burning meat throughout the neighborhood. Cars move very quickly on and off the sidewalk to access precious parking spaces, so one needs to stay alert and be prepared to jump out of the way. Sometimes a couple white bums drunkenly call out to us as we walk by. Tonight, as I left the SPAR, one of the numerous guards gave me a friendly nod of his head--an acknowledgment that was as unusual as his gesture: he moved his head upwards and to the side after making eye contact. I felt a flush of satisfaction; the unexpected joy of being 'OK'.

The sun was low in the sky, but things were hopping on the street in front of SPAR, and I could hear music down the street at the corner. I walked to the end of the block, and crossed to a small crowd in front an auto parts store on the corner where they were listening to music blasting from speakers and watching three men dance and sing along. Their dance moves were synchronized and their steps reminded me of some Zulu dancing I’ve seen—but I really have no idea where the style comes from, except that it’s decidedly South African. That said, it also reminded me of the Four Tops and the Temptations...which only confuses my attempts to ascertain the form's etiology. Many of the songs sounded like some of the SA gospel I’ve been hearing from the kids’ apartment downstairs (Anna has the TV on with gospel singing on Sundays). I felt self-conscious that I was the only white person, probably within miles, but I was determined to enjoy the experience—listening to the music and watching how the locals participated. Many women stepped and swayed along with the rhythm, some singing along with what must be well-known songs. Not for the first time, I wondered which of the nine Bantu languages was the shared vernacular. A couple young women eyed me curiously and, perhaps, somewhat warily. I can't blame them for wondering what I was doing there. An old man danced eccentrically and with enthusiasm off to the side, and a few young women (who tried not to stare at me) looked tempted to join the three men dancing. One of the trio was selling CDs and, of course, I felt compelled to purchase one. Six bucks. I'm listening to the distinctive, warming South African sounds as I write.

The extravagance of the CD meant that I didn’t have enough cash with me to buy the double electric outlet extension I’ve been wanting all week. (I never carry a purse with me to the SPAR, as robbery is so common here). There are two electrical outlets in the apartment; Louise and politely share the use of the one next to our chairs in the 'living room' area of the apartment (she needs the electric heater to stave off an asthma attack & I need it for either my laptop or the reading light). The ceiling light is glaring and hurts my eyes, but a torchiere, which relieves my eyes, flickers out all the time so I’ve given up on it and am writing in the dark now. In addition to frustrations with inadequate or eccentric lighting, electricity is a major problem now in Gauteng; every night there are notices on the TV announcing that supplies are too low & asking residents to cut back on their use. Not a problem in my place tonight...

A Trip to "Wendy's"

Yesterday, Saturday, I joined the Sanctuary kids on a trip to Wendy’s with Louise and local volunteers. Wendy’s is someone’s home (Wendy’s!), who donates it for use by a group of Occupational Therapists; every two weeks, the kids from Sanctuary are brought there in volunteers’ cars. I drove with Claire, sitting in the back with "Lerato" and "Thandi" (not their real names). Thandi is a little girl I met last Friday, who perpetually asked me, “What’s your name?” She seems to be about four, though she’s very small, and yesterday had a sore above her lip. I remember her from photos I took at Educare last year. Lerato was in the hospice until fairly recently; she was very quiet on the ride and paid little attention to things outside the car. Instead, she concentrated on removing the hairs from the sticky bonbon (“sweetie”) she gripped in her left hand. Thandi also had a sweetie in her hand, but was curious about things we passed, from painted walls, to passing cars. On the way home from Wendy’s, I encouraged her to wave to people as we passed them, and she would make a high squeak whenever she saw a car with people in it. "Thandi" is evidently further developed than Lerato, though the same size, either due to age or abilities (Lerato's sluggishness also be what some of the volunteers referred to as “hospice syndrome”). I gather this is a kind of shock or numbing that comes from the transition from all the stimulation of hospice to the competitive dangers of sanctuary and educare.

I tried to pay attention to "Nkomi" (not his real name) who seemed at sea during the OT exercises (introductions, singing, dancing etc.). I held him in my lap for an exercise that involved choosing a musical instrument from two boxes, and using it during a song. He did nothing for a while, so I picked a shaking cymbal for him. He did nothing during the song, and when it came time to turn in your instrument & pick another, he also was passive. I had to ask the OT to bring the box over to him, and then he chose another cymbal, which he did play during the song.

The last exercise involved the child lying down and resting under a starry cloth held above them and moved gently by the OT & a volunteer. Nkomi refused & cried when I gently tried to move him. Eventually, I lay us down, rested his head on my shoulder, and he immediately relaxed and fell asleep. It was a short respite, and it was very difficult to rouse Nkomi, even after all the other kids had hurried outside to juice and snack. I took his hand and slowly walked with him to get juice, which he held almost unconsciously in his hand. Then, I sat us together on a bench; after a few minutes, Nkomi came back to himself, drank his juice and ran off to get on the swing. This was one of the saddest experiences I’ve ever had with a child---such an utter regression-- I can only infer that Nkomi has suffered severe traumas and loss in conjunction with his illness. His attachment problems seem powerful, which is what draws me to him. Nkomi is a child that appeals to few (as Odette said about Gift), but needs therapeutic interventions if he is to develop with any independent capabilities. I don’t know if the mental health needs of these children can or will ever be addressed.

Home Visits in Soweto

This has been a week of no visits to the Outreach Center; Meisie was in a car accident yesterday morning and, though she's okay, is weakened by aches in her muscles from the impact. She is staying home to recover the rest of this week. I have been doing research on systems of care for vulnerable children in South Africa.

However, I did want to report on events before Meisie's accident. A week ago today, after our usual late start, turned into a full afternoon of home visits to Nomsa’s granny clients around Soweto. Our task was to distribute donated school uniforms to seven grannies for the HIV+ children they care for, entering their homes and chatting with them for a bit. Meisie encouraged me to take photos of each granny and they seemed happy to have photos taken of them and their grandchild/grandchildren. The poverty and cleanliness of each grandmother varied quite a bit. The first granny we visited lives in a one-room tin shack; neat piles of children’s laundry covered a single bed, but the “kitchen” wall was cluttered and the space was dark and rather dismal. Margaret, the grandmother was warm towards us, though she was clearly unwell and almost emaciated. Meisie told me after we left that Margaret was “positive” but has taken no steps to deal with her illness until, maybe, recently. She told Meisie that she’s been tested, but refuses to come to support group. It’s difficult to understand the degree of denial that can squelch concerns about the children’s welfare. Who will look after her grandchildren after she dies of AIDS?

Almost every granny was doing laundry or ironing when we arrived! Nomsa gave each of them a rather hideous knitted ski hat and scarf—all donations. About three grannies were not home, but we were able to leave the uniforms either with the children or a neighbor. The uniforms are for the children who are HIV+. Donations of uniforms may make the difference in whether a child can attend school or not. Some of the kids also got shoes with their uniforms.

One home we visited stood out dramatically from the others because it was bright, well-furnished, decorated with bright patterned curtains and chachkis, such as animal statues, a head of Mandela, pottery, and a beautiful enlarged photo of her eldest daughter in traditional Nbele clothing. The leather couches, while very worn, were shiny-clean, with linen squares of embroidered cloths along the backs. The granny showed me her beautiful, new tin bucket that she uses to get water for cooking or washing, as well as the two tin shacks in her back yard where her sons live. It was all very neat, and one shack had a rustic sculpture near the door made of metal and string. She was very proud of her home; as we left, I noticed and commented on her succulent garden at the front of the house. Her grandson, who seemed about ten years old, was quiet but polite and sweet. His head was covered with lesions, probably karposi’s sarcomas, and he was very thin. But, he was eating a sandwich he made for himself when we ended our visit.

Across the road and over the dusty red-dirt ‘yards’ was another client’s home, tucked behind a brick house. There were two shacks there, as well as an elder couple who seemed to live in one of the buildings. The client was not home, but someone went to fetch the two children, who would receive the uniforms, and the elder neighbor woman would sign for them. The children were delighted with their uniforms, which they took inside their shack (after posing for me). Meisie told me that Cotlands had built the shack for this granny & the children because it had been too crowded for them in the house fronting the road. It was a one-room shack constructed of corrugated tin. Cotlands also makes sure that each client has a small refrigerator (to make sure the ARV’s are kept cold), a stove, and a space heater. None of the homes we visited had running water and used outhouses for toilets. In one home, an entire room was filled with a queen-sized bed covered with stuffed animals for the children.

Home sizes varied from one room to four—I don’t know how many people actually lived in each, although none held fewer than three people. Men were few and far between. In the back of one home, the yard for two shacks and a house, several men were building coal stoves out of scraps of metal or old appliances. Another backyard that we entered held a shack and a shabeen. The client was not at home in her shack, so Nomsa had the shabeen owner accept and sign for the uniform. Four very drunk men sat outside the shabeen with their almost-quart-sized cups, filled with a yeasty brew that has high alcohol content. Alcoholics, the men will spend every cent they should to buy food on drink, much like alcoholics the world over. The little girl client appeared as we were leaving, running up to and embracing Nomsa with a huge grin on her face.

The last home I will describe was, as most of them, at the back of a house fronting the road; four children sat on a wall and got very excited by our appearance (and my camera). Meisie showed me the house garden next to the granny’s shack, which Cotlands had helped her start, and which she had added to. While it was impressive, I am skeptical that it would ever provide a significant amount of food for the family. Meisie’s goal is to have every granny in the program have a home garden to help decrease her poverty. This garden had a primitive wire fence, a box of used plastic bottles at the end, and a pile of trash or some stuff at the other end. There is much to be done with such chronically poor people, even these who are so committed to improving their lives and those of their grandchildren.

My Neighborhood in Turffontein

I am staying on the 2nd floor of Cotlands House, which serves as housing for volunteers (some of whom stay for a full year between high school and university) and for 10 children who, thanks to ARVT, have survived into the ripe old ages of 10-13. I have to unlock two iron gates to climb the stairs to the apartment I share with a Scottish volunteer, Louise, who is heading for home in 4 days after being here a year. I was not provided with a key to the outer gate, and so had to ask one of the kind women who look after the kids downstairs to let me in and out.

This neighborhood at one time was relatively affluent, or at least middle class, but the only evidence of better times is the size and structural qualities of the houses, and the fine old trees that line the streets. Turffontein is now the 2nd most dangerous neighborhood in Johannesburg and few people can be seen on the streets after dark. A few times a week, I walk to the market (SPAR) for supplies like bottled water, bread, and small meal supplies.

The walk to the SPAR begins on our street, Ferreira (named after a gold speculator who discovered gold on the Turrfontein farm back in the 1870s) to the large street at the end of the block. I have wanted to photograph this area, but have been afraid of being robbed. I did snatch a few pictures slyly the other day. The one below is taken from our entry gate, and shows some men working on a car on the left.At the corner, there’s an abandoned building on the right, which often has shattered glass scattered on the ground and sidewalk. There is a wide stretch of what would be grass between the spotty sidewalk and the street; it’s got some patches of ‘grass’, and consists of the red-orange dirt that is everywhere. Across the street, there is a covered area, like a craft fair booth, where one or two men sell haircuts and shaves. I think this was here last year, without the cover. There’s an open doorway nearby the barber that leads into a small room packed with fruit and vegetables; one of the little Spazas that can be found on almost every block (There’s also one along the walk to Cotlands from my apartment, but it’s bigger and in the evenings sells things through an iron grating. An even larger market is further down the road, situated on a classy corner spot). As I walk to the SPAR, I pass many other pedestrians and am unsure whether to smile or to avoid eye contact; I do a little of both. The pharmacy is in the block before the main intersection and the street that holds the SPAR. All over-the-counter and prescription medications are sold at pharmacies, even vitamins.

The main street is divided by a cement path, and is always bustling with both pedestrians and cars. Next to SPAR is an internet place that also sells some technology and a liquor store, where one can buy wine, beer & liquors. SPAR sells wine, but it’s very sweet. Across the street from SPAR is a vegetable market, a clothing store and others; a constant brei is in process in front of the shops, which sends smoke and the scents of burning meat around the neighborhood. Cars move very quickly on the wide sidewalk to access precious parking spaces, so we need to stay alert and be prepared to jump out of the way. Sometimes a couple white bums drunkenly call out to us as we walk by. Sunday night, one of the parking guards gave me a friendly nod of his head—a movement unusual for me—moving his head upwards and to the side after making eye contact.

Below is a photograph of the street that runs two blocks from ours to Stanton Street (too far away to see here), where Cotlands is just around the corner to the right.

HIV/AIDS & African Children

Only a very few countries have as devastating HIV infection rate as South Africa. According to AVERT, an international AIDS charity, 1000 people in South Africa die daily of AIDS-related illnesses. The South African government, with all its potential for democratic leadership, has taken on a counter-intuitive, regressive approach to the HIV/AIDS pandemic. President Thabo Mbeki and his Minister of Health, Manto Tshabalala-Msimang, have questioned the science of HIV and inimated that western nations promotion of antiretroviral treatment reflects western, white hegemony and ongoing oppression of black Africans. In spite of international and national outcries, they instead have encouraged citizens to focus on nutrition, herbal treatments, and even traditional healers (Sangomas). The activist group, Treatment Action Campaign (TAC), begun in 1998 to protest government inaction, brought homocide charges against Manto Tshabalala-Msimang in 2003, attiributing the infection rate of 600 a day to her neglect. The TAC was founded by nobel prize nominee, Zackie Achmat, who protested the government's neglect by stopping taking his ARV medication because only the affluent could afford to get adequate treatment in South Africa. In 2003, the ANC government soften towards antiretrovirals: "The government’s change in attitude towards ARVs was partly a result of a court battle in which GlaxoSmithKline and other pharmaceutical companies agreed to allow low-cost generic versions of their drugs to be produced in South Africa. This made South Africa one of the first African countries to produce its own AIDS drugs" (AVERT).

The results of the South African Department of Health Study (2007) of pregnant women who visited antenatal clinic estimated that 29.1% of pregnant women were HIV+ in 2006. The estimated prevalence in Johannesburg's province of Gauteng was 30.1%. There is some evidence to suggest that the infection rate is flattening out at this level. An earlier household survey in 2005 suggested that 10.8% of South Africans were HIV+ and for those between ages 15-49, the prevalence rate was estimated at 16.2%. However, these estimates are based on adjusted results on the 55% of the people surveyed; the remainder refused to be tested. The AIDS epidemic has had its worst impact on South Africa's poor (black) population (13.3%) and barely affected its white citizens (0.6%). The death rate between 1997-2005 increased 87% overall, but those who suffered the worst increases were adults 29-49 (169%) and children 0-9 (91%). The average estimated life expectancy of South Africans is 54 years.

Women in sub-Saharan Africa are particularly vulnerable to both the virus and discrimination in African patriarchal culture. In spite of major preventative education efforts by the government and NGOs, condom use is widely rejected by men, such that sex workers have two rates: one for unprotected and the other protected sex. The unprotected sex option is more expensive, but also opted for more often by the men who use their services. While female sex workers are often blamed for the spread of the virus, it is their customers who demand unprotected sex, and then infect their wives when they are home. Wives who take the risk to get tested and are found to be positive, are typically severly beaten by their husbands (blamed for getting sick, when it was their spouse who infected them), expelled from their homes, and ostracized from their communities. With the risks to women surrounding the discovery of infection, denial has been the coping method of choice, so that women may have one or more children before one of them becomes sick; not even in acute sickness do the women (and men) get tested, until they end up admitted to a hospital or visit a local clinic for help. This was the case for the mother with TB and HIV whom I visited early in my stay; she was not tested until she got very sick and went to the hospital and had by then infected her two youngest children.


At least 25% of children born to an untreated HIV+ mother will contract the virus, either in utero, during delivery, or through breast milk. This is called 'vertical transmission' in the pediatric AIDS literature. The benefit of proactive HIV testing for sexually active or pregnant women is that their children's chances of contracting the virus drop to about 8%. All the HIV+ children served by Cotlands (both the orphanage and the outreach program) contracted the virus through vertical transmission. The Home-based care tries to address the problem of denial and further vertical transmission by requiring that mothers be tested for HIV before their children can be admited to the program. Breaking through denial is the first step of treatment. Therefore, all the mothers of Home-based care clients are HIV+ themselves, and can qualify for ARVs along with their children. Apparently, there are a number of mothers and grandmothers who still consult traditional healers in addition to using ARVs. This can lead to complications, such as when a child with diarrhea is given enimas. The photo above is of two HIV+ children under a year old in the care of their grandmother.

One of the many tragic consequences of the AIDS pandemic in developing countries, like South Africa, is the impact the disease has on the country's economic development. "Between 1990 and 2003 – a period during which HIV prevalence in South Africa increased dramatically – the country fell by 35 places in the Human Development Index, a global directory that ranks countries by how developed they are" (AVERT). When the greatest infection rates are in the employable age group, a family can become destitute when the visus strikes. More and more households are headed by the pre-and-post-employable, that is by children and grandmothers. The photo is of a grandmother who cares for two grandchildren; the laundry is piled neatly on the bed in her one-room shack. She is also sick from undiagnosed AIDS.

A recent study, Exporing the Role of Family Caregivers and Home-based Care Programs in Meeting the Needs of People Living with AIDS, researched two Home-based Care (HBC) programs from four of South Africa's provinces and found that "most of the study's households do not have a working member" and that the bulk of their income was from pensions and/or social grants. One of the mothers I have met through Cotlands HBC married a man from Nigeria about four years ago for money, and they have stayed married although he is not involved in the care of their son, who is HIV+ and paralyzed from the waist down. Because she is married the mother and son do not qualify for grant support from the government, even though she has effectivelybeen a single mother. On the other hand, her older child does qualify because she has a different father. The mother is too ill now to work.

Cotlands Memorial Wall & Nkosi Johnson

Yesterday, I was taken to see the Cotlands Memorial Wall in Johannesburg's Westpark Cemetery. The wall was erected on International AIDS Day, December 1, 2001 to memorialize the children in Cotlands' care who have died from AIDS. During the period between 1996 and 2004, before Cotlands was able to introduce ARVs (Antiretroviral treatments), between 3 and 6 children died each month (51 in 2002); there were only 8 deaths in 2005, and even fewer in recent years. Since 2001, two more walls have been added to the first memorial wall to house the ashes of deceased children, most of whom were orphans or had no family burial place. I think there were 15-25 plaques on each side of each wall, with the years 1999-2001 each using up an entire side. Westpark Cemetery also has the grave of Nkosi Johnson, the longest living child born HIV+, whose white adoptive mother made his fight against AIDS part of a crusade to inform the public of the pandemic and to confront Mbeki's government for it's neglect in providing public access to antiretroviral treatments. He died at age 12. His adoptive mother started a foundation for HIV+ mothers and their children, named Nkosi's Haven. Just before I left the U.S., I read a book about Nkosi by Jim Wooten, We Are All The Same: A Story of a Boy's Courage and a Mother's Love (2004). Nkosi was an invited speaker at the XIII Annual AIDS Conference in Durban in July 2000, and the standing ovation he received for his plea to ANC government to provide AIDS treatments was a public embarrassment for President Mbeki, who walked out of the session. In 2005, he was awareded posthumously the first KidsRights Foundation's international Children Peace Prize in Rome.

It was somewhat disturbing to see the obvious neglect of Nkosi's grave in Westpark; the neighboring marble structures were polished and clean with fresh flowers on them, while Nkosi's was dull, littered with bird droppings, and had a meager flower arrangement. Odette, who brought me to see the Cotlands Memorial Wall, visits the cemetery regularly because a relative lies there; she said that Gail Johnson never comes to take care of the grave, even though she lives nearby.

Service Proposal & Hospice

Yesterday, I was able to identify a service I (and perhaps 1-2 of our students) can provide Cotlands on an annual basis for a short period of time each visit! Busi, the Outreach Manager, let me know that she would love us to perform assessments for the Outreach (Home-based Care) children; there are about 100 of them, and they all have developmental delays. The schools in Soweto are the worst in the area, she informed me; she thinks it would be important to know where the kids stand, as she is beginning to focus on the educational needs of these children. She also recruited me to provide a "debriefing" session for the careworkers (9) here at Cotland sometime next week. On Monday, Meisie has asked me to do an inservice for the same careworkers, revisiting basic counseling skills as well as some psychological diagnositic concepts related to children with HIV.

This morning I had a chance to visit Hospice, where I 'stimulated' an emaciated little girl--holding her, touching and moving her arms, hands, legs and feet, and eventually feeding her some Rooibus tea with milk and sugar out of a bottle. There were a physical therapist there, who comes every Tuesday morning to assess and work with the Hospice babies. She talked to me about the little girl I was holding; Meisie brought the child, 18 months old, two weeks ago from the clinic because she was "failing to thrive." The child's legs and hands were emaciated, but her lower body had not developed at all from infancy. This is apparently common, because the children are often left sitting for long periods (her upper back has developed and is strong, but her lower back is curved and that of an infant), and so they cannot crawl or walk, as a typical 18-month-old would have already mastered. Her legs were floppy and would not straighten out on their own; the bottoms of her feet are rounded like infant's. The child is very passive and fairly unresponsive to touch; she did attend to the sounds of other children in the room, and would follow a toy with her eyes when I moved it in a circle before her. When it was time to feed her, she couldn't manage the sippy cup, letting the liquid spill out her mouth onto her clothing. When we brought her a bottle, that also seemed a challenge until the physical therapist took her tiny hands and put them on the bottle; then, the child grabbed the very end of the bottle and pushed it into her mouth, drinking gustily. The PT said that this was common for babies who are left alone to feed themselves, which suggests a fair amount of maternal neglect. Almost needless to say, she is HIV+, which means her mother is too.

I made the connection at some point between this child's situation and the story Meisie told me last week: Meisie had been trying to get a hold of the mother of a child she had admitted to Hospice the week before, because she had not yet visited her child there. She finally spoke to a family member while we were driving from Soweto back to Cotlands; the mother had left the area, telling her famly that her child was in the hospital and she could visit her. Meisie, somewhat despondently referred to the mother's disappearance as 'respite.' Child neglect is a serious problem here, primarily due to poverty and all its sequelae, and to AIDS. Cotlands will make sure the child is not returned to the mother until she can care for her appropriately. The physical therapist assured me that she would improve physically with time and Hospice care; she has seen other children come into Hospice in this condition (she's worked there 25 years!) and improve significantly.

Memory Books & Home-based Care

Last week marked the initiation of Memory Boxes and Memory Books at Cotlands Outreach Center in Soweto. The Memory Books were primarily facilitated by volunteers from World Hope, a Christian NGO that recruits volunteers from places around the world. Five women from Colorado spent Monday through Friday (today) working with one or two Home-based Care clients to create their Memory Books, which can be both a legacy for their children/grand children and a positive/therapeutic process of building their story for perhaps the first time. For these folks it is also important for them to be encouraged to plan for a time when they will no longer be alive and to make a permanent record of their love for the children they leave behind. Along with the books, they have made “Memory Boxes” in which to store their Memory Books and put any things they want to leave behind.

This is a group uniquely suited to this narrative program: the grandmothers are old and the mothers are HIV+--both generations may not survive the decade. I observed that, in comparison to the young mothers, the grannies took to the task more readily, seemed to have fun, and were more talkative with each other and the volunteers. The client Meisie and I visited last Friday for our "intervention" came for the first time to the Center; she told me she was feeling a bit better and smiled radiantly for my camera.


The Memory Book and Box process has superceded the ususal support groups for the mothers and grandmothers that take place Monday through Fridays at the Center. I'm sorry to miss being able to attend these, but I doubt I would be able to follow them because very little real conversations here are in English. With enthusiastic support from one of the careworkers, it was decided that I would do a training with all of them on basic counseling. It may be that one area where I can be routinely helpful each year is in offering trainings. I think they could use some basic diagnostic knowledge, at least to identify depression and trauma, in the hopes that someday psychological services will be available to their clients. It also appears that family counseling skills could be very helpful in cases where family conflicts add to the stress of HIV+ mothers and to grandmothers caring for young HIV+ children.

The new Outreach Center building (donated in part by the NBA!) has a very large living/dining room, which accommodates couches & stuffed chairs for support group meetings. There’s a good-sized, well-equipped kitchen, two bathrooms, another function room or craft room, the office, and at the end of the hallway, a large room for childcare/Educare. The children in the program can attend while their mother or grandmother is in support group, making crafts, or sewing with the "Philagogos" ("Go Grannies!"). Tuesday, I went into that space with Busi (director of the outreach program) to dance to music with the children, who range from toddlers to preschoolers. There must have been ten or more children in a room that was too small for the. Nolobabalo, the teacher, was occupied elsewhere, and then Busi left me alone there. There was rough-housing between the two older boys, a couple girls wanting to be picked up (signalled by the universal, "Me! Me! Me!"), and a toddler systematically licking a wall heater. I was afraid to leave them alone, but finally I’d had enough and raced down the hallway, looking for Nolobabalo. Breathless, I asked if the kids were okay left on their own, and looking at me as though I were an idiot, she said, “of course!” I am clearly an ignorant foreigner! Nolobabalo must be very good at her job, for I rarely hear any distressful sounds coming from the Educare room.

The Philagogos do their sewing in the two-car garage space, which is a huge (literally) improvement from the other building in the Orlando neighborhood of Soweto. There’s a large cutting table, storage closets, and three or four sewing machines. Four mothers have joined the grannies. The former building was not only sketchy but the men living in the adjoining buildings were all ex-cons. Only women and children came to the Center, and so we all felt a bit vulnerable in that place. I learned yesterday that one of the men, who often tried to socialize with the Cotlands careworks, had been (is?) a serial killer! I don’t quite know what to make of that…what was he doing out of prison?

The new surroundings consist of permanent family homes and a high school at the end of the block. Cotlands has received a generous grant to create a large garden on school property, where the grannies will cultivate vegetables for Center lunches, to sell, and to give to those without enough food. Meisie’s goal is to have every granny in the program have a home garden to help decrease her poverty.

Where am I & What am I Doing Here?

This is my 7th day at Cotlands in Turffontein, Johannesburg, and 4th day of volunteering for Home-based Care in Soweto. This is my 2nd time around here; my first time as a volunteer was for 18 days in August 2007. I am hoping to develop a set of psychological services or consultations within the Home-based Care program which can be sustained during annual or biannual stays over more than one year. With a small grant, I might be able to bring one or two students along with me.

The needs for services to the poor in South Africa are both varied and numerous, and it takes both research and conversations with locals to identify a set of services we can provide with long gaps of time between visits. What does the tourist have to offer the underserved in Johannesburg? That is a truly humbling question; it frames everything I think and do here. If I can do anything, it must come from a dialogue between the culturally embedded needs, values, and beliefs of Sowetans and my culturally-embedded personal and professional horizons. This has been a slow process, which has included attempts by email, observations from last August, and conversations here these past seven days; it is not done, though I have a couple working objectives. Even these embryonic interventions are subject daily (hourly) to what is happening at Cotlands (an audit) and to the unique, unpredictable organizational mind of Meisie, the head of Home-based Care.

It is Meisie who I rely upon to sanction and empower me in the Home-based Care community of grannies, mothers, careworkers, and, now, families. Meisie is a community nurse who essentially runs the Home-based Care Center in Soweto, which provides counseling, medical, and development support for HIV+ children and their caregivers. Home-based care is a now widely used intervention in South Africa meant to deal with the escalating devastation of AIDS on its poorest citizens. It was intended to be a 'cheap solution' for the government because home-based care programs are run by NGOs (non-profits) and many rely on volunteers from the community to provide the support services. This reliance on the poor to treat the devastated has come under fire because it essentially is not practical and is exploitive of poor community members. Cotlands' Home-based Care employs its careworkers, who are from the community but are no longer volunteers. More on Home-based care another time. Below is a photo of Meisie (right) and Nomsa (a careworker) on a visit to Margaret, and HIV+ granny with 3 grandchildren (also 'positive') in her care.

As she drove us to the community center in Soweto, Meisie grilled me for what it was I intended to do while I was here and I struggled to communicate how my intensions were dependent upon what she thought might be some helpful ways to exploit my skills. When I suggested doing some work in families where "counseling" is seen as needed by her and her staff, or, perhaps, some training for the careworkers in basic counseling skills or family systems, she latched onto both. This resulted in her veering from her usual course to take me to a family that she knew needed therapy. I will describe the family and some events that appear interesting to me, but leave out the nature of the “problem” and other details in order to maintain confidentiality.

Without any advanced preparation, Meisie took me into a poverty-stricken home and introduced me as a "Psychologist" who would now help them with their problems. I seemed to miss the introductions, because I thought the careworker was a member of the family, which was an embarrassing gaff (among many that afternoon).

The poverty of the family was viscerally apparent in the meagre and tattered furnishings, the four small rooms (one a barren kitchen) to house six children and four adults, the black & white TV’s permanently distorted, flickering image, the diaper made of a terrycloth rag. There are two adult women in their early thirties who are HIV+ and their children. At least three children are “positive” and suffer from AIDS related disabilities. One mother had waited too long to be tested; instead, she got very ill, was hospitalized and diagnosed with TB and HIV in the hospital. Her “denial” extended to her children, one of whom had just returned from the clinic the day we were there, where she had finally been tested for the virus and found to be positive.

As is typically the case when a white professional tries to work with Africans, I needed someone to act as translator; the family members were Zulu and most spoke no or only rudimentary English. There are eleven official languages in South Africa, all of which are represented in Soweto, the countries largest black township. This need for translation creates a very interesting, unconventional process for “therapy;” much of the time I was being a “Psychologist” for the family, I sat listening to extensive exchanges between Meisie and the others, usually brought on by one of my exploratory questions. At one point, I turned to the sick mother and asked what Meisie was saying to her aunt; the mother informed me that Meisie was lecturing the aunt about her unreasonable behaviour! Amazingly, a small shift in the family process emerged as a result of our visit, which was identified by the clients themselves.

The above family visit may be the first and last of my family visits in Soweto! The past three days, an audit at Cotlands has meant that Meisie’s time at the Center in Soweto has been limited. Monday and Tuesday, we represented Cotlands at the Center while a volunteer group ("One World") faciltated groups of grannies and mothers in the creation of Memory Books (I hope to describe these in a later posting). Today, Meisie has been caught up in audit meetings all day, so I’ve been reading an article (Rochat, Tamsen & Hough, Angela (July 2007). Enhancing resilience in children affected by HIV and AIDS. Human Sciences Research Council) and creating this blog.