Psychoeducational Services and Research for HIV+ Children Receiving Proposal: Home-based Care in Gauteng’s Urban Townships

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 Services

Cotlands 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).

Playing For Change in South Africa

http://www.youtube.com/watch?v=OGqho96099Y&feature=channel

http://www.youtube.com/watch?v=G91WCCXab1c&feature=channel

Working Proposal of Assessment Services, Cotlands Community Outreach Program

Assesments will strive to be comprehensive, redundant, and multimodal. Developmental assessments should include cognitve, motor, and social-emotional levels, including parent-child relations and home environment. Psychoeducational assessments should cover cognitive abilities, academic skills, and social-emotional functioning, as well as other factors, such as home environment, socioeconomic conditions, quality of education, and physical illnesss, each of which can affect a child’s capacities to learn and benefit from education. African models of child development will be incorporated, such as the importance of siblings, peers, and related adult community members in contributing to child development. The latter will be conceptualized later, in collaboration with key informants from Cotlands community careworkers and other sources in situ.

Infants & Toddlers (0-2 years)

Cognitive/developmental assessment. Begin with screening (Bayleys-III) with primary caregiver; a translator will be needed. If a significant developmental delay is flagged, administer full Bayley’s Scales-III to estimate nature of delay; a translator will be needed.

Social-emotional assessment. Administer Greenspan Developmental Milestones with primary caregiver; a translator will be needed.

Home environment. Administer the H.O.M.E. at the child’s home with both child & caregiver present. Ideally, this would be done as part of a careworker’s visit, so that questions and replies can be translated. Administer the BDI-II and Coping Response Inventory in a structured interview with the primary caregiver, with translator.

Preschoolers (3-6 years)

Cognitive/developmental assessment. Administer selected subtests from the KABC-II and the Leiter to estimate child’s baseline measures of cognitive abilities.

Social-emotional and resiliency assessment. Administer BERS-2 with primary caregiver with translator. Use separate form with careworker’s observations. Administer the ASEBA and/or TSCYC with caregiver and careworker.

Home environment. Administer the H.O.M.E. at the child’s home with both child & caregiver present. Ideally, this would be done as part of a careworker’s visit, so that questions and replies can be translated. Administer the BDI-II and Coping Response Inventory in a structured interview with the primary caregiver, with translator.

Middle Childhood (7-12 years)

Cognitive/developmental assessment. Administer KABC-II non-verbal subtests, selected Leiter subtests, and Bender-II to estimate cognitive abilities. For bilingual students, add verbal subtests from the KABC-II Mental Processing Index.

Achievement assessment. Administer selected subtests from the KTEA-2 to estimate levels of academic achievement. Estimate English language competency for children receiving school instruction in English. Identify more ecologically valid achievement measures.

Social-emotional and resiliency assessment. Administer BERS-2 and Resiliency Scales. Administer to caregivers the ASEBA using Zulu or Xhosa translations where appropriate, or with translator. If child high on anxiety/depression ASEBA scales, administer TCYC with caregiver and careworker. With careworker, administer to the child the Depression and Anxiety versions from the BYI.

Home environment. Administer the H.O.M.E. at the child’s home with both child & caregiver present. Ideally, this would be done as part of a careworker’s visit, so that questions and replies can be translated. Administer the BDI-II and Coping Response Inventory in a structured interview with the primary caregiver, with translator.

Adolescents (13-18 years)

Cognitive/developmental assessment. Administer KABC-II to compose Mental Processing Index, selected Leiter subtests, and Bender-II to estimate cognitive abilities. Add KABC-II CHC ability subtests, depending on child’s English competency, to estimate full range of cognitive abilities.

Achievement assessment. Administer the KTEA-2 to estimate levels of academic achievement.

Social-emotional and resiliency assessment . Administer Resilency Scales and ASEBA YSR to child, with careworker translations as needed. If elevations on depression/anxiety scale, administer TCC and the Depression and Anxiety versions from the BYI to child. Administer the ASEBA to caregiver using Zulu or Xhosa translations where appropriate, or with translator.

Home environment. Administer the H.O.M.E. at the child’s home with both child & caregiver present (up to age 16). Ideally, this would be done as part of a careworker’s visit, so that questions and replies can be translated. Administer the BDI-II and Coping Response Inventory in a structured interview with the primary caregiver, with translator.

In 2005 at the International Society of Theoretical Psychology (ISTP) meeting in Cape Town (hosted by faculty of the University of South Africa Psychology) I had my first encounter not only with South Africa but with South African Psychology. This was quickly followed by attending the International Critical Psychology Conference, hosted by the University of Kwazulu-Natal department of Psychology in Durban. The two associations tend to overlap to some degree in membership and in supporting critical and social-historical inquiries into psychology's sociopolitical effects. With the exception of participating in a similarly co-occurance of these associations in Sidney in 1999, this was my only direct encounter with the ideas of psychologists outside of North America and Great Britain. It was my association with Critical Psychology and Psychologists for Social Responsibility that led me to go to Sydney and now Cape Town and Durban, and so I was anticipating exchanges and relationships with relatively like-minded psychologists who, due to their investment in social justice, exist at the margins of their own national psychological associations.

What I came away with were enduring reverberations caused by the potency of this conjunction of a minority of international leftist psychologists with South Africa in only its tenth year of democracy. I was not interested in psychology at the time of my own country's racial transformation, the civil rights movement; it is only in my role as teacher of US psychology's historical and social contexts that I relate to that time, which included uncovering psychology's contributions to maintaining a racist sociopolitical system along with its role in undermining segregation. Here I found a group of psychologists actively involved in (at minimum): (1) reorienting psychology as a discipline toward a reparation of the wrongs it had perpetrated upon its non-white citizens; (2) recreating psychology as morally bound to promote the health and well-being of those who have been wronged under society's and psychology's dividing practices; and (3) promoting the cultural lives of the oppressed in the service a multivocal, non-hegemonic psychology for South Africans. There could not be a more auspicious time and place for the emergence of transformative psychological theories and practices with implications across the globe.

In South Africa, the history of psychology is quite similar to our own in the US, primarily because we share a colonial history that included slavery of black Africans, which was followed by a system legal segregation of blacks and whites promoted by one segment of the citizenry who saw their way of life threatened by racial equality. Our involvement in eugenics ideology and practices connected with South Africa's steps toward Apartheid in ways that left a lasting imprint on the latter's development of psychology. The eugenics movement was most successful as a combined science-ideology in the US, Great Britain, Germany, and South Africa; intelligence testing was used in research to support a racist agenda in all contexts. That the majority of psychologists wrapped themselves in scientistic neutrality in the face of Apartheid's enormous crimes against humanity is does not make them unique in the profession. It was July 2008 when at last APA resolved that, "[a]ny direct or indirect participation in any act of torture or other forms of cruel, degrading or inhuman treatment or punishment by psychologists is strictly prohibited". The integration of ethnic, racial and other social minorties into APA has made progress since 1970 and still has much to accomplish, though more now in the area of leadership at the institutional and national levels. Just in time, perhaps, for when the US white population is no longer the majority racial group.

It is here, of course, at the question of size of representation where South African psychology, as a 'first world' hegemonic institution, distinguishes itself from the rest. In the US there are now explicit efforts to have the faculty and student population reflect the diversity of our national census (not taking into account the 'feminization' of psychology and other practitioner disciplines). This affirmative action goal, while evidently still difficult for us to achieve, still reserves 69% room for caucasions, 12% blacks, 12.6 hispanics, 3.6% asians, and almost 1% native americans. In South Africa's case, a representative proportion of white psychologists would be 9.1 %, black 79.6%, colored 8.9% and indian/asian 2.5%. The enormity of the change for representation in South African psychology is so overwhelming that it serves to palpably implicate an outsider like me into this tragedy of colonial and postcolonial devastation on indiginous Africans.

South African psychology has an unfortunate historical association with the orgins of Apartheid. Hendrik Frensch Verwoerd's was a graduate student and later a professor of psychology at the africaner University of Stellenbosch. Verwoerd later became a politician and was responsible for establishing Apartheid in 1959. With the exception of a small number of courageous psychologists, South African psychology did not weigh in against the apartheid regime. There were clearly significant risks involved in protesting apartheid or studying its destructive psychological (among other) effects upon non-white africans, and many emigrated to be free of apartheid's barriers to the profession or from prosecution for exposing its human rights violations. Those who remained and continued to work against apartheid are models for us all; ashamedly, I cannot imagine myself ever having their courage.

At this moment in history, at the beginning of an african South Africa, when small groups of psychologists across the world collaborate with communities and other professions in efforts to change themulti-determined conditions of poverty and oppression, what is possible? Does the enormity of the reparative change distract or defeat us? What services can western, white, critical psychologists contribute as minority players in the development of an african psychology? In what cases do we become a hindrance?

It has become clear to me that I want to make whatever contributions I can to the success of South Africa's democracy and to easing the suffering of those citizens who suffer most; my skills as a critical and clinical psychologist make up the bulk of what I can contribute. My first steps have been guided by humility, curiosity, and gratitude; I have marred these steps at other times with ungratefulness, self-absorbtion, passivity, and fear. When all of me shows up for this challenge, I cannot forget to attend to and repair unintended negative outcomes of my actions in this effort.

Proposal Accepted!

I was happy to receive the following message from Cotlands on 2/26/09:

"Dear Susan,

Conducting Research at Cotlands

The Child Development and Research Committee met on the 10th February 2009 and discussed the importance of conducting research to assess our child clients’ academic delays and how they could be addressed. The committee agreed that it is an important initial step to take in the process of addressing the educational needs of children in our care. Therefore the Committee has granted you approval to conduct this research at Cotlands. You need to submit a proposal that will be reviewed by the committee and then you can proceed with the research.

Thank you very much for your interest in the welfare of our children.

Yours sincerely,

Busi Nkosi
Community Outreach Manager"