Preparing Preschool Programs to Care . for Children with HIV Infection .
Mary
Theresa
Urbano,
PhD,
RN, ARNP,
and Barbara
J. Von Windeguth,
PhD,
RN
As a consequence of the increasing incidence and prevalence of HIV infection, preschools are seeking help in developing and implementing nondiscriminatory policies. Pediatric nurse practitioners are in an ideal position to provide leadership in adapting preschool programs to meet the special health care needs of these children. J PEDIATR HEALTH
CARE.
(1992).
6, 60-64.
A
lmost daily, the media provides updates on the number of infants and children who are infected with the Human Immunodeficiency Virus (HIV). In 1990, it was estimated that 1500 to 2000 newborns develop HIV yearly as a result of perinatal infection (Centers for Disease Control [CDC], 1990). When HIV infection was first identified, most affected children were critically ill most of their lives and did not survive until school age. With improved health care and new treatments and regimes, children infected with HIV are living longer. As a result, HIV infection has become an educational issue.
I n 1990,
it was estimated that 1500 to 2000 newborns develop HIV yearly as a result of perinatal infection.
and nursing in the of Miami in Miami,
Barbara J. Von Windeguth is formerly assistant professor of pediatrics and nursjng in the Mailman Center for Child Development at the University of Miami in Miami, Florida. Reprint requests: Dr. Mary T. Urbano, University of Miami, Mailman for Child Development, P.O. Box 016820, Miami, FL 33101. 2511128332
60
CHILDREN WITH HIV SCHOOL PLACEMENT
n
INFECTION
AND
Historically, school health focused on the needs of healthy children. Those who had chronic conditions were taught generally in special education or homebound settings, often removed from the mainstream of school activities. An increasing awareness of legislative and liability issues has crystallized the responsibility of schools to educate children with special health care needs. Legislation
Recently, legislative directives and nationally approved guidelines for pediatric care have recommended that most children with HIV infection be allowed to attend school. This position has survived legal appeals. Now, schools receiving public funds are required to avoid enrollment discrimination of children on the basis of HIV status. To comply with legislated mandates, an increasing number of preschools are soliciting nurses to assist them in developing appropriate programs. It is imperative that nurses be prepared to answer questions regarding related legislation and liability issues as well Mary Theresa Urban0 is associate professor of pediatrics Mailman Center for Child Development at the University Florida.
as concerns regarding HIV transmission and management. This article addresses those topics and provides practical recommendations for preparing preschool staff to care for HIV infected children.
Center
In 1975 the passage of P.L. 94-142, the Education for All Handicapped Children Act, mandated free, appropriate education for all handicapped children in the least restrictive environment. This led to “mainstreamed education” in which children with special needs interacted with other children for all or a part of the school day. Children with special needs benefited from more normalized educational placements, while the other children developed more accepting attitudes (Voeltz, 1980). In 1986 P.L. 99-457 extended P.L. 94-142 services to children 3 to 5 years old. Part H of P.L. 99-457 allowed states to use discretion in developing services for infants and toddlers from birth to 36 months old who were at risk for, or were suffering from, a developmental disability. Determination Developmental
of HIV as a Disability
Increasingly, acquired immunodeficiency syndrome (AIDS) is defined as a developmental disability. The JOURNAL
OF PEDIATRIC
HEALTH
CARE
Journal of Pediatric Health Care
infection in children under 13 years of age is based on a continuum from asymptomatic to Pediatric AIDS (CDC, 1987). Th’1scontinuum is viewed as representing one entity in which the child is at risk or demonstrates a developmental disability at all stages of the disease. Thus, children with HIV-infected status are guaranteed access to a public education.
I
ncreasingly, AIDS is defined as a developmental disability. Corresponding policy decisions supported placement in the least restrictive environment. Routine “separate but equal” facilities were not considered to be an acceptable alternative unless such separate placement is justified by the child’s individual assessment and care plan. Antidiscrimination legislation currently is expanding beyond nondiscriminatory school practices to include privacy and confidentiality of records and nondiscriminatory access to services, including health care, employment, and housing. liability While antidiscrimination legislation protects the rights of handicapped individuals, liability provides for the safety of others with whom the affected person must interact. Liability decisions must be based on the best information available at the time. Key considerations relate to scientific and medical knowledge and reasonable actions based on that knowledge. The resultant environment should be one that is fair and one in which no one is harmed. Liability concerns must address the agency’s responsibility (or failure) to reasonably protect all individuals from contagion, given current available knowledge. It should be noted that confidentiality requirements preclude individuals from mandatory routine HIV screening and disclosure of the names of HIV-infected individuals. Thus, guidelines should be proactive and should provide equal protection for all. Transmission of Infection As younger HIV-infected children are being considered for educational placement, special concerns regarding disease transmission have arisen. In fact, the greatest need expressed by staff is information about infectivity (Cracker & Cohen, 1988). Questions regarding infection transmission are centrally related to the issue of liability. In the case of Pediatric AIDS, the American Academy of Pediatrics supports the premise that HIV is transmitted through sexual intercourse, parenteral inoculation, or perinatal spread (American Academy of Pediatrics [AAP], 1988). Children generally contract the disease through peri-
Preschool
Programs
for
Children
with
HIV
61
natal exposure from an affected mother. Body fluids such as tears, saliva, urine, stool, or sweat may contain HIV antibodies, but there is no evidence of transmission of HIV by these fluids (AAP, 1988). Despite these findings, many are concerned with the theoretical possibility of HIV spread through severe biting with resultant bleeding, a behavior commonly found in both developmentally normal and delayed preschool children. Limited case reports of bites involving HIV-infected children are inconclusive. Studies of nonsexual household contacts in which bites or contamination of cuts and open wounds with saliva of HIVinfected persons suggest salivary transmission of HIV is rare (CDC, 1988). One of the few documented empirical studies of HIV transmission through biting was conducted by Rogers et al., (1990). The researchers examined the possibility of transmission of HIV in younger children who drooled, bit, mouthed toys, and were incontinent. The study found no documentation of HIV transmission. Other studies have found nonsexual spread of HIV infection to be rare. There has been no evidence of HIV spread to other household members (Fischl et al., 1987; Peterman, Cates, Curran, 1988). There has been no proven transmission through insects, casual contact, exposure in family or school settings, eating in public restaurants, swimming in public pools, shaking hands, sneezing, or coughing.
s
tudies have shown that transmission of HIV infection to workers, including physicians, nurses, and laboratory personnel working with infected and/or AIDS patients is uncommon. Child care workers frequently fear they will be placed at untoward risk if they care for an HIV-infected child. Studies have shown that transmission of HIV infection to workers, including physicians, nurses, and laboratory personnel working with HIV-infected and/or AIDS patients, is uncommon (Gerberding et al., 1987). The greatest source of transmission risk is through accidental needlestick with HIV-infected blood. Even with this type of exposure, the risk has been proved to be less than 1% (CDC, 1989). Health Recommendations The American Academy of Pediatrics (1988) recommendations considered the potentially devastating effect of HIV infection and the rarity of its occurrence. The current guidelines for infection control in day care centers include: 1. Admission of HIV-infected children based on individual assessment, in collaboration with the child’s private physician. Admission criteria
62
Urban0
= Box PREPARiNGFOR PRESCHOOL PLACEMENT OF HIV-CNFECTEDCHILDREN Planning
l
Creating an advisory committee Health education 0 Examination of existing policies 0 Information procurement l l
n
Prevention and Intervention Strategies l Health education 0 Universal precautions 0 Immunizations l Early identification of complications l Management of health problems
n
2.
3. 4.
5.
6.
n
Volume 6, Number 2 March-April 1992
& Von Windeguth
Evaluation and Modification
should include appropriate health criteria, neurological development, behavior and immune status. Personal physicians are encouraged to seek the advice of experts in HIV infection and AIDS when determining issues of efficacy or safety of placement within a school or group setting. Routine screening is not indicated. Parents of children in the preschool do not have the right to know the HIV status of other children. Day care centers for children with HIV infection should not be used to accomplish segregation or isolation. Universal precautions should be used in highprevalence areas and in centers that care for children known to be HIV-infected.
PREPARING PRESCHOOL PROGRAMS
Planning must address direct and indirect health services, health education, and environmental safeguards that will meet the needs of all children, especially those with HIV infection. The Box gives a summary of the following practical suggestions: Early Planning Dealing with emotionally laden issues is much easier when adequate time is given to work through the maze of information and emotion. Whenever possible, the nurse should begin to prepare preschool staff long before the actual admission of an HIV-infected child is anticipated. The identification of an interdisciplinary school planning group is a key first step in program development. The core group should be expanded to assure represen-
tation from other interested parties: parents, direct care professionals such as teachers and therapists, health care workers with expertise in pediatric AIDS, community members and policy makers, local medical society and health department representatives, and members of minority and religious groups. Planning Committee meetings should offer a safe environment in which fears and concerns can be expressed. Those who are most likely to disagree with the committee should be encouraged to comment; often disputes can be resolved in a group setting more easily than in public arenas. Literature reviews, case situations, and sessions with lawyers, AIDS experts, and those with prior experiences can provide a valuable health education base for future decisions. Following the review of related information, the Planning Committee should develop overall goals for program development. Black and Jones (1988) propose four goals: (a) nondiscrimination in school policies; (b) health education for students, taught by informed persons; (c) quality school support systems; and (d) privacy and confidentiality of medical records. Next, the nurse and other members of the Planning Committee should solicit input on program development from others who have had similar experiences. Relevant questions may be: (a) What problems have you addressed? (b) How have you attempted to deal with these issues? (c) What methods were tried? (d) How did they work? (e) What suggestions do you have? (f) What are your current and future plans? Become Aware of Existing Policies In areas where preschool programs officially serve as early intervention programs funded by the local school board, an examination of state and local school board policies may be useful. Guidelines developed for older children may have implications for preschoolers. Prioritize and Implement Intervention Strategies
Prevention and
Prevention is the only effective strategy against HIV infection and AIDS at the present. Activities can be categorized as to primary, secondary, and tertiary prevention.
P revention is the only effective strategy against HIV infection and AIDS at the present. Primary prevention. Primary prevention attempts to keep a condition from occurring in the first place. There is currently no vaccine available to prevent HIV infection. Education and risk reduction are primary strategies (Lifson, 1988). Initial action strategies include health education for
Journal of Pediatric Health Care
the Planning Committee and key policy makers. Next, health education is expanded to staff, parents, and the community. Health education at the school and classroom levels should be consistent with local, parental, and community values (Black & Jones, 1988). This approach increases the probability of community acceptance. Local health department personnel and representatives of the local medical society can provide assistance and advice. An effective health education strategy is to conduct a series of educational sessions presented by a calm, knowledgeable, neutral party. These sessions should address such issues as causative agent, natural history, transmission, risk behaviors, prevention, current management, and common misconceptions. Informal discussions in a safe, supportive environment are more effective than didactic lectures. Include teachers, teacher’s aides, bus drivers, and custodial workers, either in one group or in a series of smaller groups. The nurse should conduct health education sessions for the staff before parent and community presentations. This gives the staff time to work through their feelings and fears, before they are required to answer the questions and concerns of others. If community backlash is anticipated, the nurse should ask key media representatives to allow time for the preschool to work through this delicate process before there is widespread publicity. An essential component of any health education session should be infection control. The nurse should build on existing communicable control policies and procedures regarding handwashing, disposal of contaminated materials, interdisciplinary initial assessment and placement, temporary exclusion as a result of symptomatic health problems, and reentry to school. Notification policies can be developed to alert parents of HIV-infected children when other illnesses occur in the school setting. This is particularly true for outbreaks of chickenpox and measles, which can be devastating to the HIV-infected child. Universal precautions can be presented as an expansion of these basic policies. It is possible for a child to be infected with the HIV virus but be asymptomatic, and perhaps be unidentified. Thus, everyone should practice universal precautions to reduce the risk of exposure to blood and body fluids of all individuals, regardless of whether or not they are known to be infected with HIV (CDC, 1988‘). These precautions include meticulous handwashing, disinfection of surfaces exposed to blood or body fluids with a solution of 1 part bleach and 10 parts water, precautions to prevent needlesticks, and protection of open lesions and mucous membranes from accidental exposure through the use of gloves, etc. Except in the case of obvious blood contamination or open lesions, gloves are not indicated for schoolwork,
Preschool
Programs
for
Children
with
HIV
63
therapy, feeding, physical examination, or developmental assessment (Cracker & Cohen, 1988). Schools should provide adequate equipment such as sinks, disposable gloves and bags, and appropriate disinfectants (Black & Jones, 1988). Child care workers should be given sufficient time to become comfortable with any new infection control procedures. To many, infection control is new and intimidating. Health education sessions should include ways in which staff can integrate infection control activities into daily routines. Staff ownership of the infection control measures can be increased by involving them in monitoring activities. The infection control procedures will become selfreinforcing as the incidence of other common child care infections decreases. Immunizations are an important component of primary prevention. The Advisory Committee on Immunization Practices (Advisory Committee on Immunization Practices [ACIP], 1986) and the American Academy of Pediatrics (1987) recommend routine childhood immunizations, with some modifications for the HIV-infected child. Children should be referred to their private physician for individual evaluations. Secondary prevention. Early identification of illness and prompt action to prevent further complications is critical. In pediatric HIV infection, persistent oral candidiasis with failure to thrive is an early symptom. Generalized lymphadenopathy and hepatosplenomegaly are also commonly found.
C hild
care workers should be taught to recognize early signs and symptoms of illness and should be encouraged to facilitate prompt medical evaluation.
Child care workers should be taught to recognize early signs of illness and should be encouraged to facilitate prompt medical evaluation. Adequate hydration, skin care, and well-balanced nutrition will help to minimize untoward effects of illness. Prompt and aggressive treatment of illness, especially bacterial infections, is particularly important. Many children with HIV infection demonstrate neurodevelopmental delay, deceleration, or loss of previous achievement; changes in muscle tone; chronic fever; diarrhea; and poor growth (CDC, 1987). Developmental testing and interdisciplinary interventions may prevent further deficits. Because many children with HIV infection are from psychosocially disadvantaged homes, infant stimulation and active play therapy are particularly important. Tertiary prevention. Many of the families of HIVinfected children also suffer from the psychosocial problems associated with poverty. Thus, interdisciplinary re-
64
Urban0
& Von
Windeguth
habilitation interventions must extend to case management at family and community levels. Areas of special need include housing, financial assistance, transportation, and child care and respite from child care. ROLE OF THE PEDIATRIC NURSE PRACTITIONER
n
PNPs have a critical role as advocates in the development of services for children with HIV infection. PNPs can provide consultation and health education to teachers, parents, and other health professionals. PNPs also can influence school policy and development of infection control standards and can facilitate community acceptance of programs. After educational and service programs have been developed, the nurse can expand roles in assessment, early identification of possible health problems, direct service, and family based case management. Evaluation and modification of services will assure responsive, efficient, and effective delivery of health programs to all children, including those with HIV infection. n REFERENCES Advisory Committee on Immunization Practices. (1986). Immunization of children infected with human T-lymphotropic virus type III llymphadenopathy associated virus. Morbidity and Mortality Weekly Report, 35, 595-606. American Academy of Pediatrics Committee on Infectious Diseases. (1987). Health guidelines for the attendance in day-care and foster care settings of children infected with human immunodeficiency virus. Pediatrics, 79, 466-471. American Academy of Pediatrics Task Force on Pediatric AIDS. (1988). Pediatric guidelines for infection control of human irnmunodeficiency virus (acquired inununodeficiency virus) in hospitals, medical offices, schools and other settings. Pediatrics, 82, 801-807. Black, J., & Jones, L. (1988). HIV infection: Educational programs
Volume 6, Number 2 March-April 1992
and policies for school personnel. Journal of School Health, 58, 3 17322. Centers for Disease Control. (1987). Classification system for human immunodeficiency virus (HIV) infection in children under 13 years of age. Morbidity and Mortahty Weekly Report, 36, 225-236. Centers for Disease Control. (1988). Update: Universal precautions for prevention of transmission of human imrnunodeficiency virus, hepatitis B virus, and other bloodborne pathogens in health care settings. Journal of the American MedicalAssociation, 260,462-464. Centers for Disease Control. (1989). Guidelines for prevention of transmission of human irnmunodeficiency virus and hepatitis B virus to health-care and public safety workers. M&i&y andMvtality Weekly Repmt, 38, l-37. Centers for Disease Control. (1990). Estimates of HIV prevalence and projected AIDS cases: Summary of a workshop, October 31November 1, 1989. Morbidity andMortality Rep&, 39, 110-119. Cracker, A. & Cohen, H. (1988, August). Guidelines on dcvehpmental servicesfbr children and a&h with HIV infection. Baltimore, Maryland: American Association of University Al-hliated Programs for Persons with Developmental Disabilities. Fischl, M., Dickinson, G., Scott, G., Klimas, N., Fletcher, M., & Parks, W. (1987). Evaluation of heterosexual partners, children and household contacts with adults with AIDS. Journal of the American Medical Association, 257, 640-644. Gerberding, J., Bryant-LeBlanc, C., Nelson, K., Moss, A., Osmond, D., Chambers, H., Carbon, J., Drew, W., Levy, J., & Sande, M. (1987, July). Risk of transmitting the human irnrnunodeficiency virus, cytomegalovirus, and hepatitis B virus to health care workers exposed to patients with AIDS or AIDS-related conditions. The Journal OfInfeectiow D&ease, 156, 1-8. Lifson, A. (1988). Do alternate modes for transmission of human immunodeficiency virus exist? Journal of the American MedicalAssociation, 259, 1353-1358. Peterman, T., Cates, Jr.. W., & Curran, J. (1988). The challenge of human immunodeficiency virus (HIV) and acquired imrnunodeficiency syndrome (AIDS), Fertility and Sterility, 49, 571-581. Rodgers, M., White, C., Sanders, R., Schable, C., Kesell, T., Wasserman, R., Bellanti, J., Peters, S., & Wray, B. (1990). Lack of transmission of human imrnunodeficiency virus from infected children to their household contacts. Pediatric, 85, 210-214. Voela, L. (1980). Children’s attitudes toward handicapped peers. Americun Journal ofMental Dejciency, 84, 455464
Bound Volumes Available to Subscribers Bound volumes of the JOURNAL OF PEDIATRIC HEALTH CARE are available to subscribers (only) for the 1992 issues from the Publisher, at a cost of $28.00 ($35.96 for Canadian and $34.00 for international) for Vol. 6 (January-December). Shipping charges are included. Each bound volume contains a subject and author index and all advertising is removed. Copies are shipped within 60 days after publication of the last issue of the volume. The binding is durable buckram with the JOURNAL name, volume number, and year stamped in gold on the spine. Payment mu-t accompany ad mdevs. Contact Mosby-Year Book Inc., Subscription Services, 11830 Westline Industrial Drive, St. Louis, MO 63146-3318, USA; phone (800)325-4177, ext. 4351, (314)453-4351. Subscriptions must be in force to qualify. Bound volumes are not available in place of a regular JOURNAL subscription.