I. Title: Psychoeducational Services and Research for HIV+ Children Receiving Home-based Care in Gauteng’s Urban Townships
II. Principal Investigator: Susan E. Hawes, PhD
III. Other Investigators: Graduate student research assistants, when available.
IV Purpose of the Study: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. 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, the country’s African infants continue to be infected with the virus by their HIV+ mothers. Before ARVs, infection was an early death sentence for a child; with treatment, these children still face the stressors above, and many will grow up in institutional settings.
For years, Cotlands in Gauteng has taken steps to ameliorate the suffering of children from Johannesburg’s poorest communities. One example is their Community Outreach and Home Based Care (HBC) program in Soweto. 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, stimulation alone cannot ameliorate the psychological consequences on these HIV+ children of AIDS and extreme poverty. Cotlands, like most of these courageous but under-resourced community programs, is not alone in prioritizing physical health, economic aid, education, and caregiver support groups and have few resources for the mental health of children and their caregivers. Further, the schools in these African townships are inadequate and special education services are virtually non-existent. These children are not being evaluated for the common cognitive delays and social-emotional consequences of HIV and extreme poverty.
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’) caregivers and on the children, including their cognitive functions, academic achievement, and mental health. See Appendix A for a South African model of the relationship between caregiver and child development outcomes. 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).
V. Proposed ServicesCotlands Outreach Manager, Busi Nkosi, has observed the distressing developmental and academic conditions for the approximately 300 HIV+ children (ages 0-18) in the HBC program, and intends to make the assessment of these children’s educational needs the next target for HBC intervention. Manager Nkosi has accepted my offer to provide psychoeducational evaluations for these children during my annual month-long visits there for over a period of years. If I am able to secure financial resources through donations and grants, I would attempt to visit twice a year for 3-4 weeks.
Specifically I, and 1-3 doctoral-level clinical psychology students who may accompany me, will administer baseline developmental and psychological (neuropsychological, cognitive and social-emotional) assessments for these children, beginning in August 2009. Developmentally informed child assessments collect information from multiple sources on the following: home conditions, caregiver mental health, caregiver-child relationships, children’s development, cognitive abilities/functioning, social-emotional conditions, and academic achievement/employment potential. The primary goal is to have data about HBC’s children’s current (or baseline) abilities. Armed with the estimates of the children’s development and abilities, Cotlands can adapt their services as needed and better advocate for special academic services for these children in the schools.
The proposed services will include (see Appendices B & C):
(1) Test estimates of the infants’and toddlers’ levels of development
a. cognitive abilities
b. language skills
c. motor skills
d. social-emotional functioning
(2) Test estimates of the children’s and adolescents’
a. cognitive abilities,
b. social-emotional well-being
i. strengths
ii. behavioral symptoms
iii. levels of trauma
iv. resiliency
c. levels of academic achievement
(3) Test estimates of the caregivers’
a. mental health (specifically related to depression and anxiety)
b. levels of stress
c. coping styles and access to supportive resources
(4) Test estimates of the quality of the home environment
a. caregiver responsivity,
b. caregiver acceptance of child(ren)
c. organization of the environment
d. learning materials
e. caregiver involvement
f. variety in experience
(5) Test estimates of the Cotlands careworkers’ levels of “compassion fatigue”
VI. Proposed Research:This is intended to be a long-term study. This research will contribute to the growing body of international early childhood education literature on vulnerable children living in poverty and with HIV/AIDS; published research in this area has examined the relationship between parenting style and cognitive as well as social-emotional development in early childhood.
This study will describe: (6) Estimates of the infants’ and toddlers’ levels of development
a. cognitive abilities
b. language skills
c. motor skills
d. social-emotional functioning
(7) Estimates of the children’s and adolescents’
a. cognitive abilities,
b. social-emotional well-being
i. strengths
ii. behavioral symptoms
iii. levels of trauma
iv. resiliency
c. levels of academic achievement
(8) Estimates of the caregivers’
a. mental health (specifically related to depression and anxiety)
b. levels of stress
c. coping styles and access to supportive resources
(9) Estimates of the quality of the home environment
a. caregiver responsivity,
b. caregiver acceptance of child(ren)
c. organization of the environment
d. learning materials
e. caregiver involvement
f. variety in experience
(10) Estimates of the Cotlands careworkers’ levels of “compassion fatigue”
The study will also explore the relationships between:(1) Children’s estimated cognitive abilities, social-emotional states, and academic achievement;
(2) Caregivers’ estimated mental health, stress, coping and quality of the home environment;
(3) Caregivers’ estimates of mental health, stress, coping, and quality of home environment AND estimates of children’s cognitive, social-emotional, and academic functioning;
(4) Longitudinal outcomes of Cotlands ECD focused interventions with caregivers and/or children.
Another distinction of this study is the choice of measures to assess cognitive abilities. The cognitive ability tests developed in South Africa were modeled on the WAIS-R and WISC-R, normed predominantly if not exclusively on white South Africans, and have not been revised since the 1960s. While the need for culturally valid, locally normed standardized tests is unquestionable, there are advocates for not “reinventing the wheel” and for building culturally valid test from international tests that meet current psychometric standards and models for cognitive assessment. The latter is the course I intend to pursue, specifically batteries with strong non-verbal tests and developed for multicultural assessment purposes.
The choice of the Kaufman Assessment Battery for Children-II (KABC-II) is founded on the test’s (a) development and success as a multicultural instrument for assessing children’s cognitive abilities, (b) adaptation for the assessment of nonverbal abilities in children without a command of English or those who are developing English as a second language, and (c) incorporation of the Carroll-Horn-Cattell model of cognitive abilities assessment (a psychometrically strong model of expanded cognitive abilities), which can be used to assess children with adequate English language skills. The Leiter International Performance Scale-Revised (Leiter-R) was selected to supplement the KABC-II for children with weak English language skills in those cases in which invalid subtests or uninterpretable scales occur with the KABC-II. The Leiter-R is a multiculturally sensitive nonverbal cognitive battery that also can be administered nonverbally.
Neither of these batteries has been studied in South Africa, and there are no norms on South African children. What distinguishes them from tests developed and normed in South Africa is that they (a) are recent revisions of international tests, (b) were developed to be used for multicultural purposes, and (c) in the case of the KABC-II, use a model of intelligence or cognitive abilities that is not founded on a single source, such as the Wechsler Intelligence Scale for Children-IV. Nonetheless, for the KABC-II to be both internationally and culturally valid for the multifaceted, multilinguistic South Africa, a long-term goal should be the evaluation of the validity of its scales with South African children and the incorporation of a local South African normative base.
(1) In order to determine how suited these tests are for this specific South African population, factor analyses of cognitive ability test scores will be compared to the battery’s U.S.-based factorial structure.
(2) The cultural suitability of test items will be assessed using local consultants. This item should precede the one above, but because this study is founded in service first and foremost, the analysis of test items will be assessed after the first site visit has been completed. Any changes to the items would have to go through several steps of not only interpretive analysis, but permissions from the authors and publisher.
VII. Methodology: All research data will be drawn from the assessment services to be provided to the Cotlands Community Outreach Program. No research measures will be introduced that are distinct from the primary service objective: to provide the best available assessment practices in the service of these children and the program that cares for them.
Final permission to use the data produced by these assessment services in the proposed research will be sought from the Cotlands Child Development and Research Committee. While this committee has given the primary researcher prelimnary approval to do this research, final approval rests on their positive review of this proposal.
The assessment and research data will be kept according to our rigorous efforts to protect the confidentiality of all the participating children, caregivers, and careworkers. Two storage systems for the assessment data will be created by the assessment clinicians/researchers. The first hold the assessment records (test scores & assessment reports), which will be the property of Cotlands Community Outreach Program and filed according to their policies and requirements. These records will be kept in individual file folders on the Cotlands premises; assessment clinicians and the primary researcher will have permission to access these until the conclusion of each assessment. The second storage system will be maintained by the researcher(s) for research purposes only. One part will consist of test protocols, absent identifying information, since we are legally required to retain those published materials. The other part will consist of data bases containing all test scoring programs and test scores, observations, relevant demographics, and a copy of the each final report with names and other idenfying information removed; each item related to indiviual cases will identified by code numbers.
VI. Duration of the Study:The duration of this study is impossible to specify at this preliminary stage. Because the site visits may be restricted to month-long visits once or twice a year, the baseline assessments alone may take several years to complete. Follow-up assessments will also need to be built into the service delivery plan. The possiblity of involving more local psychologists in this project will be explored, and would also impact the duration of the services (and, therefore, research).
