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.
