Introduction to a special issue on international perspectives on HIV/AIDS in the schools: Neuropsychological and psychoeducational implications

ABSTRACT

Although it has been about fifty years since we learned how human immunodeficiency virus (HIV) is transmitted and leads to acquired immune deficiency syndrome (AIDS), it continues to be a global pandemic with different incidence levels around the world. These differences, in part, are driven by the resources and governmental policies available to prevent HIV as well as by unique cultural factors. The purpose of this special issue is to explore how school psychologists and educators around the world are coping with pediatric HIV in schools from a neuropsychological and psychoeducational perspective. This includes intervention, prevention, and the influence of culture and governmental policies. Countries were selected to represent different parts of the world as well as some with very high incidence levels; this included Kenya, the United States, South Africa, India, and China. The special issue concludes with a call to action.

KEYWORDS:

• HIV
• AIDS
• Neuropsychology
• Psychoeducational
• Intervention

Pediatric human immunodeficiency virus (HIV) represents a global health crisis that has differential effects on children’s mortality and morbidity dependent, in part, upon the resources, attitudes, and health care services in the child’s country. The combination of biological, psychosocial, and governmental variables renders HIV a complex disorder in regard to sequelae with acquired immune deficiency syndrome (AIDS) considered the end stage of the disease. Although there are increasingly effective prevention and intervention protocols in place, many areas around the world continue to see relatively high prevalence rates, and a combination of marginalization, stigma, and discrimination interfere with efforts to reduce the occurrence and spread of HIV. Indeed, “fear of stigma and discrimination is the main reason for non-disclosure and reticence to obtain treatment, with children being particularly vulnerable as a result of becoming infected and orphaned. They may be rejected by society, denied access to schooling and health care and suffer from ostracism, as well as physical and verbal abuse” (Johnson & Naidoo, 2017, p. 73). Other considerations in relation to efforts to reduce the incidence and effects of HIV and AIDS are governmental policies and laws, both at the state or federal level, which can also have a profound effect on the outcome of children with these conditions. Given their training and expertise, school psychologists and other school professionals can influence outcomes in children with these conditions. HIV has the potential to significantly disrupt a child’s neurodevelopmental trajectory including their academic, social, emotional, cognitive, and physical functioning (Brackis-Cott et al., 2009; Hermetet-Lindsay et al., 2017; Kamau et al., 2012; Laughton et al., 2013; Martin et al., 2006; Mellins & Malee, 2013; Punpanich et al., 2012; Ruel et al., 2012; Smith & Wilkins, 2015). As such, school psychologists should be familiar with the effects of HIV and AIDS along with available prevention, intervention, and treatment programs.

Although the roles of school psychologists vary by country, a fairly typical role involves the administration, scoring, and interpretation of tests. The purpose of assessment may be diagnostic in nature or may be conducted to help determine eligibility for special education and/or to create strength-based interventions and accommodations. When conducting assessments, it is important to understand the neuropsychological profile that is associated with HIV given its potential to affect the central nervous system. For example, HIV can have a significant effect on a child’s central nervous system, including the areas of attention, processing speed, language, visual-spatial skills, memory, sensory-motor functioning, and executive functioning (Alcock et al., 2016; Brackis-Cott et al., 2009; Cohen et al., 2015; Ezeamama et al., 2016; Hermetet-Lindsay et al., 2017; Koekkoek et al., 2008; Laughton et al., 2013; Lowick et al., 2012; Martin et al., 2006; Walker et al., 2013). Psychiatric problems are also prevalent in this population with one study from South Africa showing that 42.6% of children between the ages of 6 and 12 had somatic problems and 37.1% had affective concerns (Visser et al., 2018). Another study conducted in Addis Ababa with children aged 6–14 receiving highly active antiretroviral therapy (HAART) for at least one month showed 39.3% exhibited emotional and behavioral problems; low income and parental loss shown to be an associated factor (Tadesse et al., 2012). Thus, it is essential to ensure that assessment batteries capture these multiple areas to help ensure that a functional domain is not missed which could lead to a misattribution of the source of the deficit or decline.

Beyond assessment, school psychologists have the ability to be involved in multiple areas of care for children with HIV. For example, they should be the expert in the school regarding the effect of neurodevelopmental disorders and acquired neurological conditions, including their effect on academic and social functioning. As an example, children with HIV frequently miss school due to medical appointments and hospitalizations. Knowledge of the neurodevelopmental effects of HIV can help school psychologists be involved with ensuring that the child’s education continues when they miss instructional time. There are also advantages to providing education about HIV in the school environment. Although sometimes controversial, schools provide an opportunity for a uniform science-based approach that can bypass cultural, religious, or generational values, which could interfere with effective prevention and intervention efforts (Bastien et al., 2011).

An important mediating variable in the prognosis and outcome of HIV is the quality of intervention services that are available in the child’s school. Schools can represent an optimal setting to provide assessment of, and intervention for, areas of deficit, given that schools often represent the most stable and consistent environment in which children spend a substantial portion of their time. The prevention and intervention services for children with HIV that are available, however, dramatically differ around the world. This is due to a myriad of factors, which include differences in prevalence rates, conceptualization of and attitudes toward HIV, stigma associated with having HIV, governmental and non-governmental funding for intervention and prevention, types of psychological and other health care services available in the country, and special education laws and regulations.

Although many chronic health conditions deserve international attention, HIV represents a particularly salient concern for children given continued misunderstanding and stigma (Harrison et al., 2018). Although there has been increased understanding in the prevention of HIV, it is estimated that about 980 children (aged 0–19) around the world each day were infected with HIV in 2018 alone (UNICEF, 2019). There is a substantial need for literature about prevention of, and intervention for, children with HIV from an international perspective. A search of the literature focused on cognitive functioning among children with HIV revealed that the majority (63%) were from North America with only seven studies from Africa, which is concerning given that this is where the majority of children with HIV reside (Sherr et al., 2009).

School psychologists should be aware that children with HIV may have other difficulties as well which could exacerbate the patient and their family’s ability to cope with the disease. These conditions could be present prior to the child contracting HIV, as in the case of a neurodevelopmental genetic disorder, or the result of HIV infection. In regard to the latter, children with intellectual disabilities represent a particularly vulnerable population given their poor reasoning skills. As Hanass-Hancock et al. (2018) describe, “research indicates that learners with intellectual disability are perceived simultaneously as non-sexual and forever children, incapable of sexual relationships (and so not needing sexuality education) or oversexed, exacerbating fears that any discussion of sexuality will increase difficult and promiscuous sexual behavior” (p. 107–108). Another concern for children with HIV is that they may be disproportionality from lower income groups which places them at risk for other health problems, which may complicate HIV. A qualitative study of children in Zimbabwe (Campbell et al., 2012) used drawings to show that the stigma associated with HIV was separate from stigma associated with poverty, which would suggest that poor children with HIV have multiple risk factors related to stigma.

The purpose of this special issue is to review the differences in prevalence rates, conceptualization of attitudes toward HIV, the associated stigma, funding, and special education laws and regulations in countries around the world with a focus on the role of school psychologists in the assessment of and intervention for children with HIV. We approached this from a neuropsychological perspective, which incorporates the relationship between the neurological and neurocognitive effects of HIV, the child’s environment, and other psychosocial variables. In essence, advocates for improved physical and psychiatric health outcomes for children with HIV, which includes school psychologists and other educators, should be aware not only of the policies in their school but also opportunities to improve services. This special issue allows for an examination of similarities and differences in how school psychologists approach HIV. Inviting perspectives from experts who represent different countries and cultural contexts cultures also allows for future research and practice suggestions that may not otherwise be evident.

The first article, International Perspectives on Pediatric HIV and AIDS in Schools:

Neuropsychological Effects and Interventions in Kenya by Gabbidon and Chenneville (this issue), is an important article given that countries in Sub-Saharan Africa, such as Kenya, carry approximately 70% of the HIV disease burden across the world. In 2018, Kenya was one of the countries most affected by HIV with a 4.7% prevalence rate among 15–49 year olds (Avert, 2019a).

The second article, International Perspectives on HIV/AIDS in Schools: Neuropsychological and Psychoeducational Effects and Interventions in the United States by Davis, Short, and Chittooran (this issue) was selected given the well-established system of school psychology in this country. Additionally, researchers in the United States have been quite active exploring the neurological and cognitive effects of HIV on children’s functioning. Although the prevalence of HIV is somewhat lower than other countries there is disproportionality that, along with persistent stigma, marginalization, and discrimination that must be addressed.

The next article, by Cockcroft and Cassimjee (this issue), is titled International Perspectives on Pediatric HIV and AIDS in Schools: Neuropsychological Effects and Intervention in South Africa. South Africa has an extremely high prevalence rate of HIV of 20.% in adults (ages 15–49) (Avert, 2019b). These numbers demonstrate that, despite decades of scientific research on HIV, people around the world continue to experience this disease at a high rate due to a number of factors, including engaging in risky sexual behavior.

The fourth article in this special issue, International Perspectives on Pediatric HIV/AIDS in Schools: Neuropsychological Effects and Intervention in India by Chittooran (this issue) describes the impact of HIV/AIDS in a country that has the third largest population in the world, after South Africa and Kenya, of individuals with HIV. Recent estimates suggest that India has about 2.1 million people living with HIV, of whom 61,000 represent children under the age of fourteen. The article describes a number of initiatives that have resulted in a decline in HIV infection and mortality; however, these efforts must remain sensitive to India’s cultural context, including its collectivism, poverty, and diversity.

The next article, International Perspectives on Serving Children and Youth with HIV/AIDS in Schools: Neuropsychological Effects and Interventions in China, by Wang, D’Amato, & Cox (this issue) addresses the impact of HIV/AIDS in the most highly populated country in the world. Individuals in China who have HIV, experience not only the physical effects of the disease but also the associated discrimination and cultural stigma. China’s response to HIV demands a comprehensive and culturally sensitive approach to the management of this condition.

The final article by Chenneville, Davis, and Chittooran (this issue) serves as a conclusion to highlight some of the key findings across articles and to describe the similarities and differences in how different countries address HIV in the school setting. The conclusion also summarizes suggestions for future research and practice for school psychologists and other school professionals around the world who are interested in the neuropsychological effects of HIV and appropriate interventions for students living with HIV.

In conclusion, HIV and AIDS remain a significant concern around the world for children and adolescents although there are promising prevention and intervention programs that can be implemented in schools. More research on this topic is clearly needed. We hope this special issue will shed light on the potential role of school psychologists in addressing the HIV epidemic in schools and other settings across the world.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Notes on contributors

Andrew S. Davis

Andrew S. Davis is the Chair of the Department of Educational Psychology, a Professor of Psychology and the Director of the Ball State University Neuropsychology Laboratory. His research interests are primarily focused on applied aspects of clinical neuropsychology. This includes the neuropsychological functioning of neurologically and psychiatrically impaired individuals and psychometric issues in neuropsychological assessment. Dr. Davis was the Founding Editor of the Journal of Pediatric Neuropsychology and currently is an Associate Editor of the International Journal of School and Educational Psychology. Dr. Davis is a licensed psychologist and a diplomate of the American Board of Pediatric Neuropsychology.

Mary (Rina) M. Chittooran

Mary (Rina) M. Chittooran is a nationally certified school psychologist, an Associate Professor in the Education Policy & Equity Program in the School of Education, and a member of the Asian Studies faculty at Saint Louis University. Her primary research interests are in research ethics, intercultural competence, applied neuropsychology, and promoting the wellbeing of school-age children. Her teaching experience focuses on multicultural issues, research methods, and professional ethics. Chittooran is in her second term as an Associate Editor of the International Journal of School & Educational Psychology, serves as the Child Advocate on Saint Louis University’s Institutional Review Board, and is originally from India.

Tiffany Chenneville

Tiffany Chenneville is a Professor and Chair of the Psychology Department at the University of South Florida and the Marie E. and E. Leslie Cole Endowed Chair in Ethics. She holds a Joint Appointment in the Department of Pediatrics where she serves as a Behavioral Health Consultant for the Pediatric and Adolescent Infectious Disease Program. Dr. Chenneville’s program of research is in the area pediatric and adolescent HIV with a focus on the psychosocial issues affecting youth with HIV and ethical issues related to HIV prevention, treatment, and research. Dr. Chenneville is recognized as an international expert in this area with ongoing projects in Kenya, South Africa, and England. She also has collaborated on projects in India. Dr. Chenneville was the recipient of a Fulbright Specialist Award in 2018. She has published extensively in the area of HIV.