What educators should know about HIV?

Abstract

HIV in children has presented substantial challenges to those that plan for and provide educational and social services. In addition to complications associated with immunologic compromise, developmental disabilities are feared consequences of congenital HIV in children. The high frequency of HIV and AIDS related neurodevelopment problems in children has also posed special dilemmas to those who provide services to children with developmental disabilities. Because early intervention and education are the major concerns for children with HIV, early intervention service providers and educators have a very important role to play. In what follows, we will discuss HIV and developmental delays, federal laws pertinent to the rights of persons with disabilities, the importance of interdisciplinary services, and psychosocial implications for children infected with and families affected by HIV. We will conclude with practical implications for early intervention service providers and educators.

**********

Although it was known by other names for several years, Acquired Immunodeficiency Syndrome (AIDS) was first described in the early 1980s. In its short history, this disease, caused by the human immunodeficiency virus (HIV), has become a pandemic. In the United States, it initially appeared to affect primarily gay men; however, it is now known to occur worldwide, among all populations, with an increasing incidence among women and, secondarily, their newborns. Although the last two decades have witnessed major advances in treatment, HIV infection remains an ultimately fatal disease. Among children, it is often associated with developmental disabilities (Rutstein, Conlon, & Batshaw, 1997).

The majority of children with HIV are born to women with HIV infection as a result of injecting drug use or heterosexual transmission of HIV. Pediatric HIV infection is especially widespread in this country among children of African-American and Hispanic heritage (Francois-Xavier Bagnoud Center, 1997-2000). In an effort to provide a broader meaning to issues associated with HIV infection among children, this paper discusses HIV and developmental delays, federal laws pertinent to the rights of persons with disabilities, the importance of interdisciplinary services, and psychosocial implications for children infected with and families affected by HIV. We will conclude with practical implications for early intervention service providers and educators.

HIV and Developmental Delay

HIV can have a profound physiological impact on children. Unless early intervention service providers and educators are aware of the disease manifestations in children with HIV, all efforts will be futile. Two major areas of concern are developmental disabilities and neurodevelopmental effects of HIV. Developmental disabilities are feared consequences of congenital HIV in children, and such complications are associated with immunologic compromise. From the outset of the pediatric AIDS epidemic, reports in the medical literature have linked congenital HIV to neurologic dysfunction (Crocker, Cohen & Kastner, 1992).

Many children with HIV infection do not gain weight or grow normally. HIV-positive children frequently are slow to reach important milestones in motor skills and mental development such as crawling, walking and speaking. As the disease progresses, many children develop neurological problems that may result in difficulty walking, poor school performance, seizures, mental retardation and cerebral palsy. Like adults who are HIV-positive, children with HIV may develop life-threatening opportunistic infections (OIs), although the incidence of various OIs differs in adults and children. Also, as children with HIV become sicker, they may suffer from chronic diarrhea due to opportunistic pathogens. Children with HIV suffer the usual childhood bacterial infections--only more frequently and more severely than uninfected children. These bacterial infections can cause seizures, fever, pneumonia, recurrent colds, diarrhea, dehydration and other problems that often result in extended hospital stays and nutritional problems (Crocker & Cohen, 1990). HIV-positive children frequently have severe candidiasis, a yeast infection that can cause unrelenting diaper rash and infections in the mouth and throat that make eating extremely difficult and painful.

Most of school going children have normal cognitive functioning. When a child develops HIV infection, a decrease in cognitive function can result because of central nervous system (CNS) dysfunction resulting in decline in academic performance (Gay, Armstrong, Cohen, 1995; Nozyce, Hittelman, Muenz, Durako, Fischer, Willonghby, 1994; Chase, Vibbert, Pelton et al, 1995 & Tardieu, Mayaux, Seibel, et al. 1995). The trials of antiretroviral therapy show improvement neurodevelopmental functioning in children with HIV infection (Englund, Baker, Raskino et al., 1997). Clinical disease occurs at different rates, indicating that optimal therapy can delay or prevent CNS dysfunction (Englund, et al., 1997). It should be ensured that initiation of developmental testing, evaluation of CNS function, and the appropriate referral of children to early intervention and special education programs should be the same as for children with other chronic illness that can require such services. Physical education programs suitable for the needs of children with the developmental disabilities or chronic illness child, including those with HIV, should be available (Bruder, 1995).

Neurodevelopmental Effects of HIV

Many children with HIV exhibit near-normal neurodevelopment functioning until late in the course of their illness. There appear to be two main patterns of neurodevelopment outcomes relative to HIV infection. The first pattern is a devastating progressive encephalopathy (Rutstein et al., 1997). This affects 10%-20% of HIV-positive infants, with the onset of symptoms between 6 and 24 months of age. In this situation, an infant will suddenly lose previously acquired developmental milestones. In addition, this decline in developmental level may be associated with the appearance of neurological abnormalities including hyperreflexia, toe walking, tremors, weakness, abnormal muscle tone, and progressive motor dysfunction. Many of these children will manifest a rapidly progressive neurological deterioration, resulting in spastic quadriplegia (Gay, et al. 1995).

The second main pattern of impaired neurodevelopment in HIV-positive children begins with a period of deterioration followed by a "plateau" phase, with neither loss nor gain of developmental milestones. After a variable interval, some children will begin to acquire new skills, while others will deteriorate further (Rutstein et al., 1997). Early antiretroviral therapy may prevent the occurrence of a progressive encephalopathy in some children and may improve neurological status in others. Infants who are HIV-positive and without evidence of progressive encephalopathy, frequently exhibit subtle signs of static encephalopathy. Development in the first two years of life is slower among children that are HIV-positive in comparison to HIV-negative children born to infected mothers, even when controlling for maternal drug use, illness, and poverty (Diamond, 1989; Crocker, et al. 1992). There is an increased incidence of attention-deficit/hyperactivity disorder, as well as learning disabilities, in this population (Grubman, Gross, Lerner-Weiss, 1995). Specific problems with expressive language skills are also common in school age children that are HIV-positive.

More generalized problems with language expression also may exist. Among children with HIV--associated encephalopathies, verbal, motor, and emotional expression may be quite limited. Such children may appear apathetic, unable to generate purposeful actions, and demonstrate little verbalization or motor action. Motor problems are commonly reported with active HIV disease. These deficits may involve fine motor control problems similar to well-known mild deficits seen among children with developmental problems. For some children there may be impairments of muscle tone or gross motor control affecting balance and gait (Wodrich, Swerdiik, Chenneville, & Landau, 1999). For the older child who is HIV-positive, regular monitoring of school performance and appropriate use of school resources are critical for optimizing education outcomes.

Federal Disabilities Rights Laws

Important legislation exists for children and adolescents with disabilities including HIV infection. There are several laws to improve the ease of use of services in schools to assist children with special health care needs to benefit optimally from education. The early intervention service providers and educators should be familiar with federal disabilities rights laws. The Individuals With Disabilities Education Act (IDEA), as reauthorized in 1997, is an outgrowth of the Education of All Handicapped Children Act of 1975 (PL 94-142) and the Education of the Handicapped Act Amendments of 1986 (PL 99-457). IDEA is federal program that applies to children and youths, between ages 3 to 21 years, with developmental disabilities and health impairments. It includes a provision to encourage states to expand opportunities for children less than 3 years who would be at risk of having substantial developmental delay if they did not receive early intervention services. IDEA ensures access to needed educational services and provides for related services (transportation, speech pathology, audiology, counseling, physical therapy, and medical services for diagnosis) that may be required to assist a child with a disability to benefit from special education (AAP, 2000).

Interdisciplinary Service Provisions

Management of pediatric HIV infection must be truly interdisciplinary to maximize efficacious results. Comprehensive management should include well-child care, anticipatory guidance for treatment of common childhood illnesses, modification of the immunization schedule, nutritional support, and the provision of early intervention services needed with regard to educational and psychological needs (Bruder, 1995). Assessment and treatment is best carried out in a child-centered, family-focused, culturally sensitive program that is usually part of a special immunology clinic in a children's hospital (Mok & Newell, 1995). Children with AIDS must be provided services that address both aspects of the infections effects: developmental disabilities and special health care needs (Bruder, 1995). This should include medical care, psychological testing, social services, educational planning, speech-language therapy, nutritional counseling, advocacy, and service coordination.

Medical Management of Pediatric HIV Infection

Although the range of medical complications of children who are HIV positive is daunting, evidence suggests that survival can be prolonged by early identification of HIV status and treatment (Crocker & Cohen, 1990; Crocker, et al. 1992). Major medical advances have included the use of antiretroviral therapy to inhibit viral replication, prophylactic antibiotic therapy to guard against Pneumocystis carnii pneumonia, and immunotherapy with intravenous immunoglobin to reduce the frequency of febrile illnesses and sepsis (Rutstein et al., 1997).

Developing an effective HIV vaccine is a major research goal. It is hoped that eventually a vaccine will protect adults from HIV infection and prevent HIV-positive pregnant women from transmitting the infection to their newborns. In addition, an effective vaccine could boost an infected individual's immune response against HIV and help prolong the clinical latency period. Developmental Assessment and Early Intervention Services. The development of children with HIV infection may be effected by the virus, as well as by other confounding environmental and biological factors, such as in utero exposure to drugs, premature birth, low birth weight, and failure to thrive (Diamond, 1989). Long-term hospitalizations, chaotic family environments, and neglect also may add to the effects of HIV infection. Finally, parental illness or death, often accompanied by foster care placement, can affect the child's development (Diamond, 1989; Diamond & Cohen, 1989).

Identifying neurodevelopment delays as early as possible is essential. Children with HIV infection need developmental assessments at regular intervals. In general, infants who are HIV positive should be evaluated by two months of age and then at least every six months for the first two years of life if they remain asymptomatic (Grubman, et al. 1995). After two years of age, these children should have a neurodevelopment assessment at least yearly. If clinical symptoms develop, assessments should be more frequent, especially if a developmental delay, plateau or a decline in skills is identified. In older children, neurodevelopment assessment should include tests of cognition, communication, motor development, social-emotional and adaptive functioning, and academic abilities (Grubman, et al. 1995). Children with HIV infection who are younger than three years of age and have associated developmental disabilities should be enrolled in an early intervention program. Children ages 3-5 years should be referred to their county school committee for preschool special education placement if they have a developmental delay or to Head Start if developing typically (Bruder, 1995). Habilitative services (e.g., occupational therapy, physical therapy, speech-language therapy) also should be provided to children who have neurodevelopmental impairments. Additionally, school-age children may need special education services (Bruder, 1995; Beverly, 1995).

For the first time researchers have linked heart failure to increased risk of death in children with HIV, according to a study in the September, 26, 2000, issue of Circulation. The study shows that heart problems were associated with dying from AIDS regardless of a child's CD4 cell count. Researchers also found that, "compared to children without heart problems, those who had heart abnormalities--such as reduced pumping ability, an enlarged left ventricle, or abnormal thickening of the heart muscle, were more likely to die within three years of being diagnosed with a heart condition" (Henderson, 2000). The symptoms and life expectancies of children with HIV vary extensively, depending on the child and the particular infections or illnesses they have contracted. The average life expectancy for children with neurological disease is less than 3 years, while children with recurrent bacterial infections can expect to live many years. As better strategies to manage HIV infection with medications and to control opportunistic infections associated with HIV are evolving, survival times are increasing for children with HIV infection (Centers for Disease Control and Prevention, [CDC], 2000).

Psychosocial Issues

The psychological and social aspects of pediatric HIV infection are complex and require an interdisciplinary team approach, with care delivered in a nonjudgmental, culturally sensitive manner. Pediatric HIV infection is a family disease, with one or both parents and frequently several children infected (Woodruff, 1994). Many of these families are already severely stressed, with their family life buffeted by poor finances, substandard housing, crime, interfamily physical abuse (Lesar & Maldonado, 1994), and substance abuse. As with any chronic illness, the diagnosis of HIV infection may at first be met with denial, disbelief, and anger. In addition, it is still a socially stigmatizing illness. Infected adults may fear disclosure of their status and are afraid of losing their jobs, homes, health insurance, and the support of their families and friends (Woodruff, 1994). Management of the complex medical and social problems of families affected by HIV requires a multidisciplinary case management team, integrating medical, social, mental health and educational services (Mok & Newell, 1995).

Individual counseling, support groups, and case management or service coordination may help the families through the crisis surrounding the initial diagnosis. Access to state-of-the-art medical care and new treatment protocols is also an important part of caring for children with HIV infection and their families. An important issue that each family faces involves disclosure of the diagnosis to the infected child. Many parents are reluctant to discuss the infection with their children, out of fear that they will indiscriminately disclose their status to friends, teachers, and extended family members (Wodrich, et al. 1999). In addition, parental guilt over having passed on the illness to their children may hinder disclosure. There is no set "best" time to discuss the HIV status with a child; it is a process that should be determined by the developmental level of the child and the needs of the parents (Wodrich et al., 1999). Again, nonjudgmental support from the treatment team will help families through these difficult decisions (Rutstein et al., 1997).

With new treatment modalities, many children infected perinatally with HIV will survive well into their teenage years. As adolescents, they will face multiple issues. In addition to reactions to disclosure of their illness, they will also face issues associated with sexual activity, personal responsibility, and group identity. Children with HIV infection may exhibit multiple mental health problems, including depression, anxiety, and adjustment reactions. These can be secondary to neurological aspects of the illness itself or be related to the child's reaction to the fatigue and pain of a chronic illness. In addition, many of the medications prescribed for infected children can lead to a general feeling of malaise, accompanied with frequent gastrointestinal side effects. Lack of parental attention and supervision, secondary to the parent's own illness, can also play a role in a child's behavioral problems. Older children may require antidepressant medication and psychotherapy to help them understand and adjust to the diagnosis and prognosis of H1V infection.

Practical Implications for Early Intervention Service Providers and Educators

Medical breakthroughs in HIV treatment have enabled more children to attend school and participate in school activities (Bruder, 1995; Beverly, 1995). Children with HIV infection should receive the same education as those with other chronic illnesses, and may occasionally require special services, including home instruction, to maintain continuity of education (Bruder, 1995). Findings related to children infected with HIV have relevance for early intervention service providers and educators. Education of Children with HIV/AIDS and Developmental Disabilities. Children with and without HIV infection cannot be identified as such. Hence their educational opportunities should be the same. The I/IV infection has not been identified as contagious. Therefore all children should be given equal opportunity for schooling which promotes a sense of belongingness (AAP, 2000). Hence, children that are HIV-positive should participate in all activities in school to the extent that their health permits, which occludes a spectrum of illness ranging from no symptoms to AIDS.

The children with HIV are similar to their peers, and most have normal patterns of development and behavior. Their attendance at schools poses minimal risk of HIV transmission to other children. Universal precautions in cleaning up sources of possible exposure to blood and other bodily fluids should be followed by staff members. Training sessions may be required for preschool and school boards, administrators, doctors, nurses, and teachers to help them gain accurate information and overcome fears about HIV. (Francois-Xavier Bagnoud Center, 1997-2000).

School-Based AIDS Awareness and Training Programs. In order to work effectively with young children infected with AIDS, early childhood special educators must become aware of priorities, concerns, and resources of family members infected with and affected by HIV (Lesar & Maldonado, 1994). Further, early childhood special educators must be able to communicate with the family in order to establish collaborative goals for the child, and to design appropriate interventions that can be delivered in the context of the family (Woodruff, 1994). A family-centered approach to providing services to children and families is thus dependent on a relationship between early childhood special educators and families that is based on mutual trust and respect (Bruder, 1995).

Children with AIDS have unique needs. The educational system needs to be prepared to meet the crucial needs of students who are HIV positive. Children who are HIV-positive need educators who can and will respond to their special needs. Teachers' actions may serve as a model for families supporting the child in the home and in the community (LeRoy, Powell & Kelkar, 1994).

Special Education and Related Services. Many children with HIV disease develop characteristics that will require special education and related services. Approximately 78% to 93% of all children with HIV disease develop some form of central nervous system (CNS) dysfunction (Diamond, 1989; Gray, 1989). Once the CNS is affected, developmental delays and several kinds of cognitive deficits, including mental retardation, can result. Some researchers believe, in fact, that HIV will become the largest infectious cause of mental retardation and brain damage in children (Crocker & Cohen, 1990; Diamond & Cohen, 1989; Gray, 1989).

A small percentage of children with HIV experience developmental delays from early infancy. These delays can also be due to prenatal exposure to drugs or alcohol, premature birth, or low birth weight. The related services of speech/language, occupational, and / or physical therapists may help children overcome delays. Some other children will experience developmental delays due to the physiological impact of HIV on the brain. These changes may be slowed or reversed through treatment with medications. Some children will need special education programs. In addition, children experiencing these physiological changes and their families will need encouragement and support (Francois-Xavier Bagnoud Center, 1997-2000).

Adams & Biddle (1997) has reported the results of a 1996 study exploring the beliefs and attitudes of teachers about working with HIV-positive students. Results indicated the importance of education provided through a collaborative effort among various stakeholders was most important to teachers feeling competent. Educating children who are HIV-positive takes an added measure of care and collaboration. Based on the results of this study, researcher makes two basic recommendations for the community of caring educators. First, school districts need to provide more in-service training and keep teachers current with literature related to HIV/AIDS in school settings; and second, colleges and universities need to prepare pre-service teachers to work with both children who are HIV-positive and their families.

The American Academy of Pediatrics (AAP) (2000) has also provided recommendations for teachers and school personnel. AAP recommends that school personnel must be educated about H/V disease and the potential long-term needs of children that are HIV-positive. The schools should have training programs for school personnel in standard precautions and in recognition and management of medical emergencies. Some students with health care needs, including HIV, may need medications administered during the school day and established school procedures should be used maintaining confidentiality. In special circumstances, it may be necessary to disclose the information about the infection to the school personnel or to the person who is directly involved in the medication of the student (AAP, 2000).

Collaboration with Community-Based HIV/AIDS Programs. Some school personnel, including early intervention service providers and educators may not be in a position to implement AIDS-related educational or counseling programs in the schools; however, they should be aware of community-based programs that can provide counseling and other HIV-related services. Also, school early intervention service providers and educators can collaborate with AIDS services organizations, pregnancy prevention, and sex or drug awareness programs to provide training and continuing education for school staff (Gilbert, 2001).

Conclusions

HIV infection represents a threat to the development and survival of children across the world. Millions of adults and children have been infected with HIV. Children are typically infected from their mothers late in pregnancy or during labor and delivery (AAP, 2000). Women commonly contract the infection as a result of intravenous drug use or unprotected sex with an infected man. The challenges faced by children with HIV infection and their families are multifaceted and require the assistance of many service providers, and early intervention service providers and educators are included.

Medical treatment for children with HIV must focus on antiretroviral therapy against bacterial infections, and active and passive immunization against viral infections. This approach has markedly increased survival time such that many perinatally infected children are living into adolescence. The prolonged survival also emphasizes the importance of an interdisciplinary approach to management which includes, in addition to medical care, the provision of early intervention and special education services, psychosocial counseling, and advocacy for the family. For many reasons, the school setting is very important to children with HIV. Among other things, the school environment provides a sense of normalcy, allows students to interact with other peers, and is very important to students gaining a sense of self-worth. Early intervention service providers and educators play a crucial role in this adjustment. Only when early intervention service providers and educators have requisite knowledge regarding HIV and developmental challenges that children with HIV are faced with can early interventionists and educators begin to provide the necessary services to students.

References

Adams, D. R. & Biddle, J. K. (1997). AIDS in the classroom. Journal for a Just & Caring Education, 3(3), 277-289.

American Academy of Pediatrics. (2000). Education of children with human immunodeficiency vires infection. Pediatrics, 105(6), 1358-1360. Also available at http://www.aap.org/policy/re9950.html. Retrieved on Dec. 8, 2002.

Beverly, C. (1995). Providing a safe environment for children infected with human immunodeficiency virus. Topics in Early Childhood Special Education, 15(1), 100-110.

Bruder, M. B. (1995). The challenge of pediatric AIDS: A framework for early childhood special education. Topics in Early Childhood Special Education, 815 (1), 3-100.

Centers for Disease Control and Prevention. (2000). HIV and AIDS in children--Questions and Answers. Available at http://www.fxbcenter.org/hivbasics/hiv_aids_qa.html.

Chase, C., Vibbert, M., Pelton, S.l., et al. (1995). Early neurodevelopmental growth in children with vertically transmitted HIV infection. Arch Pediatric Adolescent Med., 149, 850-855

Crocker, A. C., & Cohen, H. J. (1990). Guidelines on developmental services for children and adults with HIV infection. Silver Spring, MD: American Association of University Affiliated Programs.

Crocker, A. C., Cohen, H. J. & Kastner, T. A. (1992). HIV infection and developmental disabilities : A resource for service providers. Baltimore: Paul. H. Brookes.

Diamond, G. W. (1989). Developmental problems in children with HIV infection. Mental Retardation, 27, 213-217.

Diamond, G. W., & Cohen, H. (1989). H1V infection in Children: Medical and neurological aspects (Tech. Rep.). American Association of University Affiliated Programs.

Englund, J., Baker, C, Raskino, C., et al. (1997). Zidovudine, didanosine, or both as the initial treatment for symptomatic HIV-infected children: AIDS Clinical Trials Group (ACTG) Study 152 Team. New England Journal of Medicine, 336, 1704-1712.

Francois-Xavier Bagnoud Center (1997-2000). HIV and AIDS in children: Questions and Answers. www.fxbcenter.org/hivbasics/hiv_aids_qa.html

Gay, C. L., Armstrong, F. D., & Cohen, D. (1995). The effects of HIV on cognitive and motor development in children born to HIV-seropositive women with no reported drug use; Birth to 24 months. Pediatrics, 96, 1078-1082.

Gilbert, D. J. (2001). HlV-Affected Children and Adolescents: What School Social Workers Should Know. Children & Schools, 23(3), 135-142.

Gray, C. D. (1989). Opening comments on the conference on developmental disabilities and HIV infection. Mental Retardation, 27, 199-200.

Grubman, S., Gross, E., & Lerner-Weiss, X. (1995). Older children and adolescents living with perinatally acquired human immunodeficiency virus infection. Pediatrics, 95, 657-663.

Henderson, C. W. (2000). High Rate of Heart-Related Deaths Found in HIV Infected Children. AIDS Weekly, 12-14.

LeRoy, C. H., Powell, T. H., & Kelkar, P. A. (1994). Meeting our responsibilities in special education. Teaching Exceptional Children, 26, 37-44.

Lesar, S., & Maldonado, Y. A. (1994). Infants and young children with HIV infection: Service delivery considerations for family support. Infants and Young Children, 6(4), 70-81.

Mok, J., & Newell, M. L. (Eds.). (1995). HIV infection in children: A guide to practical management. New York: Cambridge University Press.

Nozyce, M., Hittelman, J., Muenz, L., Durako, S. J., Fischer, M. L., & Willoughby, A. (1994). Effect of perinatally acquired HIV on neurodevelopmental growth in children during the first two years of life. Pediatrics, 94, 883-891

Rutstein, R. M., Conlon, J. C. & Batshaw, M. L. (1997). HIV and AIDS: From mother to child. In M. L. Batshaw, (Ed.) (1997). Children with disabilities. Baltimore: Paul H. Brookes.

Tardieu, M., Mayaux, M.J., Seibel, N., et al. (1995). Cognitive assessment of school-age children infected with maternally transmitted human immunodeficiency virus type 1. Pediatrics, 26,375-379

Wodrich, D. L., Swerdlik, M. E., Chenneville, T., & Landau, S. (1999). HIV/AIDS among children and adolescents: Implications for the changing role of school psychologists. School Psychology Review, 28(2), 228-242.

Woodruff, G. (1994). Serving the needs of children with AIDS and their families: A case for comprehensive community-based and family-centered programs. Teaching Exceptional Children, 26(4), 45-48.

Neena Khanna, University of Kentucky 

Sonja Feist-Price, University of Kentucky

Dr. Neena Khanna is presently a graduate student of assistive technology in the Department of Special Education and Rehabilitation Counseling. She has a long experience of teaching graduate classes in special education at Kurukshetra University in India. Dr. Feist-Price is an associate professor in the Department of Special Education and Rehabilitation Counseling.