Friday, August 29, 2008

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:


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


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.

Thursday, August 21, 2008

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.