Family, social, and legal issues

Family, Social, and Legal Issues Ma~yBoland, Car@nBurr, andDavidHarvey

he emergence of the human immunodeficiency virus (H1V) epidemic has been rapid, leaving providers, academic institutions, and policy makers struggling to catch up. The potential for occupational transmission of HIV engenders considerable fear and anxiety, among those expected to provide care in the health, social services, and educational systems. Stigmatization, stereotyping, and violence have accompanied disclosure of diagnosis in health care and community settings. Thus, health care providers may he uncertain and may feel unprepared to respond to the needs and concerns of children and families with HIV infection. HIV infection in children has multiple manifestations. Children increasingly will be diagnosed in the asymptomatic stages of H1V disease before the development of acquire .d immunodeficiency syndrome (AIDS). Advances in supportive treatments and antiviral therapy benefit many children. Thus, HIV has become a chronic childhood illness requiring distinct types of care and service as children move through the continuum of illness. The prolonged course, and the variation of symptoms, requires families to deal for years with the impact of the illness not only on the identified patient or patients but also on the family system. This article describes the impact of these developments on the delivery of care to HIV-infected children and their families, and addresses the role of physicians, nurses, and other care providers. Areas to be explored include treatment dilemmas, provider-parent collaboration, community concerns, and legal and ethical issues.

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Background In the United States, children who are at risk for HIV infection or already infected are born primarily to women with a history of injection drug use or sexual contact with a male partner at risk because of drug use or bisexuality, t These women are predominantly from minority groups, between the ages of 20 and 39 years, single-parent heads of households, living in poverty, and eligible for Medicaid. 2 A substantial number of these families are being supervised by child welfare agencies, and some children may be living with extended family members or in foster homes. For families in these circumstances, health care has been difficult to access. Too often, these families enter the health care system only when there is evidence of acute or life-threatening illness. Health care institutions (and providers) frequently are

From the National Pediatric HIV Resource Center, Department of Pediatrics, University of Medicine & Dentistry of New Jersey, New Jersey Medical School, Newark, NJ. Address correspondenceto Ma~y Boland, MS, RN, Children's Hospital of New Jersey, 15 S Ninth St, Newark, NJ 07107. Copyright 9 1995 by W.B. Saunders Company 1045-1870/95/0601-0006505.00 40

unresponsive and uncaring, and are viewed with distrust and, occasionally, outright hostility. Negative experiences with health care and social service systems may cause these families to seem uncaring, passive, noncompliant, and hard to reach. Physicians must move past the stereotypes if they are to forge positive collaborations with these families. In spite of their sociological similarities, each family is unique as its members struggle to meet the needs of each individual and maintain the family system while dealing with a chronic, life-threatening, and ultimately fatal illness in one or more family members. The ongoing care needs of multiple family members and the inability to separate the health and social service needs of families have catalyzed the development of new approaches to the care of H1V-infected children. 3 Typically, such programs attempt to provide comprehensive services throughout the continuum of wellness and illness, incorporating concrete social services with health care (Table 1). The organization and structure of such programs vary with each community, but it is clear that such cooperative efforts are having an impact on the delivery of services.4 The multiple providers involved with a family must develop mechanisms that assure coordination and collaboration. Failure to do so can result in fragmentation, duplication of services, provider manipulation, and staff or agency splitting.

Chronic I l l n e s s Because early reports of vertical HIV infection described traits shared with chronic illnesses of childhood, the first care systems were designed to offer comprehensive, continuous, communitybased and family-centered care. Chronic illnesses occur in approximately 10% to 20% of all American children, yet most health care services are oriented toward acute episodic illness and most care providers share that orientation. Children with special health care needs (as children with chronic illness are often termed) are acknowledged to have different expectations of their care providers. A significant body of research has defined the particular management issues as well as their psychosocial and societal effects on children, siblings, and the family system. Evidence indicates that this conceptual approach to building systems of care is appropriate for HIV infection with some modifications. Research is only now beginning on the multigenerational impact of HIV, particularly for healthy children confronted with multiple losses at a young age)

Parent-Provider Collaboration The variation in expectations between chronically ill consumers and acute care providers can lead to conflict and a struggle for control. The parent and the provider must reach a consensus if care is to be delivered appropriately to the child. Thorne and

Seminars in Pediatric Infectious Diseases, Vol 6, No 1 (January), 1995.'pp 40-45

Family, Social, and Legal Issues T a b l e 1. Possible Components of a Comprehensive Approach to HIV-Affected Families Confidentiality Culturally sensitive, family-focused care Develo~ an accepting nonjudgmental relationship Positive xttitude by all caregivers to promote hope Assistance in developing a long-term plan of care for HIV-infected child and siblings Community-based case management and coordinated care Easy access and availability of a single care provider Repeated verbal and written information regarding HIV disease and its effects Easy access to medical care for parents and children. Assistance with disclosure to family, friends, sexual partner, and infected child Counseling services (including financial, bereavement, siblings, crisis intervention, couple or family therapy) Counseling regarding sexual behaviors, precautions to reduce risk of pregnancy, and transmission to sexual partners Drug treatment programs, 12-step groups (Cocaine Anonymous, Narcotics Anonymous) Public health nursing or home health nursing visit Informal and formal support groups Day-care or other child-care resources Transportation services Respite and hospice care Assistance in developing a long-term plan of care for the HIV-infected child and siblings Legal assistance (wills, guardianship, powers of attorney) Spiritual care (hospital chaplain or clergy) Reprinted with permission. 2~ Robinson have proposed a stage theory to describe how the provider-parent relationship must evolvefi Initially families have a naive trust that is shattered in the face of unmet expectations and conflicting perspectives. This can be particularly severe with cases of HIV infection, when the parent realizes that the physician (no matter how experienced) does not fully understand the disease process and has little treatment to offer for many of the H1V manifestations. This shattering of trust can lead to anxiety, frustration, confusion, and distrust. Eventually, a more guarded and selective trust, with revised expectations, is constructed so that the family can continue to receive care. The provider and parent now negotiate not only boundaries for patient and parent participation in decision making but also the extent to which the parent can or should be informed about the illness. As time passes, the parents regard themselves as competent and expert in the care of their child, and the providers, who recognize and trust the parenting skill of caretakers, are rewarded by the placement of a reciprocal and increasing trust. When such a relationship does not evolve, parents develop an air of resignation that can include withdrawal for a period of time, or they may go through the motidns of cooperation without any expectation of meaningful help, feeling distrustful and powerless because of the overwhelming nature of the HIV diagnosis.

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Because of the multiple and varying needs of the HIVinfected child, a relationship between parents and providers will evolve over time. Parents have an ongoing need to negotiate the system as they become increasingly knowledgeable about health care delivery. The pediatrician must be willing to invest in the development of a physician-parent relationship based not only on the shared realization that existing knowledge and service delivery have limitations but also on a mutual acknowledgement of, and respect for, the different experience of parent and physician. Family participation must be sought when developing the plan of care. The "ideal" plan of care may not be the realistic one for the life style and circumstances of a particular family. Perceiving the physician and the institutions as authority figures, parents may be reluctant to give accurate information because of a fear that they will be judged or viewed derisively by professionals. Nurses, social workers, and community-based case managers can help by assessing the family situation, education, and adherence to treatment. 7 Chemical dependency involving alcohol and/or drugs (prescription, nonprescription, and injection) is a problem for many families. Such substance abuse has a behavioral and emotional effect on the abilities of parents in addition to its psychological impact on children. The drug use brings its own problems and may interfere with the parent's ability to provide the necessary care for the child, particularly as the disease progresses and aggressive treatments are initiated. Addicted parents may not see that they should choose to seek treatment. Unfortunately, in some families the problems are longstanding, even multigenerational, and may be resistant to treatment. Physicians and nurses dealing with addicted or substance-abusing parents must learn to recognize, and cope with, the behavioral manifestations of addiction (Table 2). For some parents, the diagnosis of H1V presents an opportunity for change. Substance abuse treatment is accepted and sobriety is maintained. Intensive community-based services such as day treatment and case management are required to

T a b l e 2. Interventions With a Substance-Abusing Parent Acknowledge substance abuse behavior. Hold the parent responsible for his or her actions. Evaluate the parent's motivation for referral to drug and/or treatment program. Make resource information available to the parent, and facilitate referral to appropriate sources of assistance. Offer hope of stabilization through the use of positive health measures. Encourage and support the parent's verbalizations of feelings such as anger, grief, and loss. Be alert for negative impact on the child of the parent's addiction and resultant behavior. (Request assistance from other agencies as needed if the child's physical or emotional well-being appears threatened.) Recognize the potential for the parent with a history of substance abuse to relapse into using or abusing during difficult times. Reprinted with permission.2~

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support child care in such fragile families. Some families develop a strong spiritual orientation that enables them to move beyond the pain t)f their own diagnosis and life circumstances, reaching out to others who are struggling to cope with the same reality.

Treatment Dilemmas HIV/AIDS has forced general pediatricians and subspecialists to acknowledge the existence of problems beyond their scope of responsibility, such as legal issues,, multigenerational illness, substance abuse, and homelessness. They also are asked to deal with clinical situations that lack precedent and defy s!mple resolution. Following is an overview of areas that frequently must be addressed.

Informed Consent The need for parental consent for routine treatment and for investigational drug trials leads to a set of complex legal and ethical questions. After investigations and public inquiry into institutional civil rights abuses in the 1970s, disability attorneys, civil rights advocates, and policy planners worked to develop and implement specific procedures to protect the rights of participants in research and treatment. The investigational nature of many HIV/AIDS treatments, and the lack of full knowledge and information about this disease, present difficulties for achieving informed consent. Consent also can become complicated when infants or children require specific treatments and their parents are unavailable, either because of their own illnesses or because of prolonged drug use, or the parents may be unreachable when emergency treatments requiring parental consent are necessary. "Informed Consent" exists when a competent patient makes decisions about diagnostic tests, treatment, and research based on disclosure of all relevant information. 8 Generally, children are considered unable to make medical treatment decisions, and parents-or legal guardians are given the right to make the decisions for them. The right of children to assent is recognized as a protection of the rights of human subjects and is a requirement for participation in AIDS Clinical Trials Group funded investigational drug studies that receive federal funds. Increasingly, states are passing laws that recognize the rights of adolescents to consent to medical treatment. When neuropsychiatric disease occurs with HIV infection, a parent's ability to make crucial decisions regarding treatment may be impaired. In the case of a parent who is judged to b e mentally incompetent, decisions about custody and care of surviving children become extremely complex matters. Such decisions are further governed by specific state laws regarding care and custody of minors ~.Social workers in health care settings experienced with HIV are knowledgeable and can serve as a resource. AIDSspecific community-based organizations provide legal services at tow or no cost to people living with HIV and their families. Such resources also can be utilized by pediatricians.

Research and Clinical Trials Consent for the participation of HIV-infected children as research subjects and in clinical trials has been debated. As clinical trials of experimental drugs have been introduced, there

is concern that poor patients who lack medical insurance or whose insurance provides only limited medical coverage will feel coerced and will be unable to give consent in a totally free way. 9 There also is concern that parents may be forced to accept "voluntary" participation in research protocols in order to gain access to specialty or tertiary care. Equally complicated situations involve children who have been placed in foster care or with extended family. Children placed involuntarily in foster care are under care of the state, and legal custody lies with the child protective service agency. Ethical concerns have been raised about the need to ensure that such children do not become targets for studies involving experimental drugs. These concerns are exacerbated in minority communities where there is a history of such abuses and, resultantly, there is a great deal of suspicion regarding the involvement of children in drug studies. Complicated issues arise when the biological and foster parents disagree over the decision by the child protective agency or the medical authorities regarding the treatment plan.

Use of Life-Sustaining Treatments Decisions regarding continuation of treatment, palliative care, and the refusal of life-sustaining care are complicated. All experience to date with children suggests that HIV/AIDS is ultimately fatal. However, recent reports describe children living productively into their second decade with and without aggressive treatment. As this understanding of the natural history develops, decision-making becomes more complicated. CDC-based epidemiological data provide only cursory information about the most frequently occurring conditions that cause morbidity and mortality and, consequently, these data are inadequate to use as a guideline. Most clinicians caring for HIV-infected children can provide anecdotal evidence of children whose condition improved unexpectedly and who subsequently enjoyed a period of quality life with their families. Therefore, decisions about aggressive intervention or withdrawal must he made jointly by the family, physician, child (when the child is able to understand and participate, and also able to communicate fears and wishes), and others, including ethicist, psychologist, and possibly legal counsel. Similarly, the failure to recognize that further intervention has become futile increases suffering and places an unnecessary burden on pediatrician and family. Children and families fear the process of dying, with its accompanying loneliness, pain, and loss of control. Families need reassurance that the child is not being abandoned, but that the focus of care is changing to provide a dignified death free of pain in a comfortable environment (whether hospital or home). When families are included in decision making, they feel more confident that their child is valued as a human being and that their input is critical in this stage of illness management. These dilemmas become more complex when medical providers reach decisions different from those of family members or when there is more than one parent. In most states, foster parents lack the legal authority for such decision making, even though they may have served as the caretaking parent since birth. Sensitive providers must convey their acceptance of the parenting role and must establish open and ongoing communication between all of the involved parties.

Family, Social, and Legal Issues

C o m m u n i t y Concerns The pediatric provider also needs to be involved in HIV education in the community. Often, that means working with schools on the design and implementation of HIV prevention education. I~..gh quality HIV prevention materials are becoming increasingly available, but these materials should be carefully reviewed for accuracy and for sensitivity not only to issues related to sexuality and drug use but also to attitudes which support respect and compassion for H1V-affected people. Pediatric professionals also can help build coalitions in communities by linking families affected by HIV with organizations serving families of other children with special health care needs. These families face very similar issues, and organizations with a broad mission for serving chronically ill children can provide a source of support and advocacy for families affected by H1V. These organization also can help families secure services that they might not be aware of.

Day Care An accumulating body of information suggests that the risk of transmission of HIV in a day care setting is remote or nonexistent even when mouthing behavior of shared toys takes place and many children are not toilet trained. I~ The Committee on Infectious Diseases of the American Academy of Pediatrics recommends admission of children whose health, neurological development, behavior, and immune status are acceptable for participation in a group setting. H Barrier precautions are recommended for use on a universal basis in accordance with CDC guidelines. 12 Many states also have adopted licensing regulations that incorporate universal precautions to minimize the risk of transmission of all infectious disease. Small, wellstaffed day care settings offer the most protected environment, and specialized HIV centers may be used when available. Federally funded Head Start Centers frequently are used by children with HIV infection, because their goals are to develop social competence in preschool children from low-income families. Components of social competence are defined as "cognitive and intellectual development, physical and mental health, nutritional needs, and other factors. ''13 Day care centers accepting HIV-infected children must be concerned with protection of confidentiality, infection control, staff health, selection and orientation of staff, training, and staff support.14

School Developments in education have increased, the receptivity of schools to children with chronic illness. Children with HIV infection have the full protection of the law ensuring their attendance at school in the "least restrictive environment" possible. Public Law 94-142, the Education of All Handicapped Children Act, mandates that schools provide special education and related services to all children, no matter how severe their disability. Further, guidelines from the CDC and from the American Academy of Pediatrics have been updated as an understanding of the illness develops and as a growing body of research continues to indicate that HIV is not transmitted through casual contact.14 While law can mandate the entry of children, it cannot provide acceptance or assure a normal academic and social

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experience for the child. The first children with HIV infection were not easily accepted into the classroom. School systems lacked recent experience responding to the entry of children with a disease caused by a poorly described and inadequately understood infectious agent. While several of the national school health associations have produced policy guidelines specific for H1V, individual states and school systems have a great deal of autonomy in the development of school policy. The growing number of children with special health care needs has prompted revision of school nursing standards affd an expansion of multidisciplinary collaboration. The absence of national school health standards for health services has resulted in tremendous variance in the availability of school-based health services. A recent national survey of 75 of the country's largest school districts found that these schools were investing considerable time, energy~ and talent preparing for students with HIV infection) 5 Education for parents was identified as critical, because once parents feel comfortable that schools are ensuring the safety of all children, their distress and distrust lessen. Only 22% of school boards, those most responsible for policy, were receiving specific information about the integration of children with H1V infection into the school setting. Best practice guidelines (available in English and Spanish), which address the preparation of the school setting, the enrollment process, and the assurance of appropriate services, are now available.I6

Talking With Children About HIV The rising incidence of HIV infection across the United States means that increasing numbers of communities and families will be affected by HIV. The pediatric provider has a responsibility to be knowledgeable about HIV infection in order to respond to community needs and to the needs of individual families. Families may seek assistance in talking with their children about HIV infection because a family member or friend is HIV-infected or because they are concerned about preventing HIV transmission. Some fundamental concepts about children's understandings of illness can help providers and families respond appropriately to children's needs for information in a way that is developmentally appropriate. As children's cognitive processes develop, so does their ability t o understand illness. Walsh and Bibace, in a study of 60 children in three age groups, found that the casual thinking of children about AIDS follows the same developmental sequence as their casual thinking about other illnesses, t7 Young children (ages 2 to 7) in Piaget's stage of prelogical thinking are egocentric. They focus on events that are external and observed, and they have little understanding of events which are internal or unseen. They make no distinction between cause and effect or they link them through magical thinking. Older children in this stage can differentiate a cause for illness from the symptoms or effects, but they cannot link the cause to the effect. Questions about HIV/AIDS from young children need to be answered in simple terms. Since they cannot differentiate cause and effect and do not understand the inner workings of the body, details of H1V prevention education (eg, "Use condoms when having sex" and "Don't share dirty needles") are meaning-

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less to children at this age. However, the teaching of simple hygienic measures, such as washing hands and not touching someone else's blood, can provide a basis for more specific HIV education later. Magical thinking can lead to irrational fears, so children should be encouraged to talk about their worries about H1V. Reassu'r-ance from a trusted authority, such as a parent, teacher, or health professional, usually allays their concern. Children in the concrete logical stage of thinking (ages 7 to 10) differentiate better between self and others, understand some inner bodily functions, and link cause and effect. Concrete examples of causes of HIV infection (eg, sharing dirty needles) as well as ways in which HIV is not transmitted (eg, mosquitoes, sharing combs) can be incorporated into discussions about HIV. In this stage, children are more able to understand causes of HIV and its effects on the body. When children enter the formal logical stage of cognitive development, they see themselves as distinct from but related to others. Not only can they understand cause and effect but they can also posit multiple factors which influence each. H1V discussions can now focus on teaching children actions and behaviors that can help them avoid HIV. A number of resources are available to help parents and professionals talk with children about H1V. 18 Resources appropriate to the child's developmental level and responsive to the child's information needs should be selected. Families in which a member is HIV-infected may seek advice about answering not only factual questions but difficult ones from children about the course of the illness and death. Families can use the opportunity to talk about the need of HIV-infected people for compassion and support, and the importance of friends and loved ones to a person with a serious illness. Disclosure of someone's HIV status to a child is complicated not only by the child's developmental level, but also by considerations of confidentiality. People with HIV and their families often fear discrimination, and even reprisals, in their community. Families must consider how and when to tell a child about the HIV diagnosis of a family member or friend, and they need to be prepared if a child learns about it inadvertently. When the child is HIV-infected, the issues are even more difficult. The child usually has been involved in the health care system and has some understanding that he or she has an illness. An assessment of the child's developmental status can help a family gauge the child's understanding of illness, and that can be used as a guide for beginning the discussion. Families may seek help from health or social service professionals in talking with their child. Disclosure of H1V status to a child is a process which unfolds over time. Children may need to ask for t~e same information again and again or may seem not to have understood the information that was given. Disclosure of diagnosis is not a solitary act, but an ongoing dialogue between the child and the family which can be supported by health care professionals.

Legal and Ethical I s s u e s Discrimination People infected with H1V have encountered instances of profound stigmatization and discrimination in the United States. One study found 13,000 reported complaints by people of all

races, gender, ethnicity, and sexual orientation. 19 Complaints were recorded by people diagnosed with AIDS, by individuals who were caring for them, and by people simply perceived as having AIDS. The study found that discrimination was experienced in insurance benefits, housing, rural health care services, and especially among dental and nursing home care providers. In cases specifically invoMng the care of children with HIV/ AIDS, providers have denied selvices based on the diagnosis of a fatal illness and an assumption that the child with HIV has an early mortality, despite an increasing awareness of the chronicity and lengthening survival times for children with H1V infection. The Americans with Disabilities Act ~(ADA) expands antidiscrimination protection for people with disabilities both in the public and in the private sectors in employment, public accomodations, state and local government, health services, and telecommunications. The ADA extends the prohibition of discrimination in federally assisted programs and incorporates specific prohibitions of discrimination on the basis of disability. In the short time since its passage, the ADA has been used to remedy specific AIDS discrimination cases throughout the United States.

Confidentiality The major ethical controversy regarding HIV/AIDS has-been about striking a balance between the right to privacy of the person with HIV and the duty to protect the welfare of the community and society at large. The advent of HIV and AIDS brought these issues to the forefront as the public health and advocacy systems struggled with the need for reasonable and rational policies that balanced patient confidentiality and protection of the public. This issue is not yet resolved and will continue to be brought before the courts. Information on-HIV serostatus reported to state health agencies and the CDC is protected under state and federal confidentiality regulations. Several'states have passed legislation attempting to define the limits of confidentiality, so that the infected person is protected from the sequelae of disclosure which have included stigmatization and loss of employment, housing, and health insurance. Some infected children have been unable to go to school, and uninfected children of an infected parent or sibling have also been kept out of school. The underlying principle of confidentiality is the right to privacy, based both in legal and in ethical considerations dating from the earliest days of the medical profession. Health care providers inherently have access to a great deal of confidential information. This information may be obtained from the family and/or it may be accessible through wTitten records. The family may be unaware that providers have an intimate knowledge of their present and past. This right of access implies a responsibility to protect and maintain the confidentiality of the patient.

Disclosure Patient information held within a single institution or health care facility may be shared among professionals who specifically provide direct care for patients. However, this duty to maintain patient information in confidence is not absolute. Therefore, health care facilities have adopted policies stating specifically

Fami~, Sodal, andLegatIssues the responsibility of providers to protect information related to all patients receiving care. Most provider~ do not knowingly disclose information regarding a patient. Sharing information indiscriminately" with other staff members can cause harm. As a result, institutions have developed po'llv.i.'es and procedures to assure compliance with state legislation. Physicians should be knowledgeable about informed consent procedures, an d they should ensure that these policies are consistent not onlywith the states specific HIV laws and other regulations but also with the code of ethics for their relevant professional association. Physicians should look to the policies and procedures of their facilities for guidance regarding confidentiality in their individual work setting. Those caring for children with HIV infection also are aware of private information regarding risk behaviors and infection status of parents. This information also is considered private and protected. For providers aware of the HIV diagnosis, disclosure of diagnosis-related information is more likely to occur accidentally rather than intentionally. Typically, a casual discussion of a patient's condition in the hospital elevator, or a patient's chart left in a conference room used by parents, results in disclosure of diagnosis to a visitor, staff member, or another parent. In both inner city and rural communities, patients and staffmay live in the same neighborhoods and may be connected through ties of church, school, sports, or employment. HIV status is disclosed to colleagues on a need-to-know basis. Since casual transmission of HIV does not occur, there is no need to inform other parents on the inpatient unit about the diagnosis. Family-to-family networking is a source of strength to many parents who meet and get to know each other through their contacts in the hospital or at treatment programs. The informality created through these networks often extends to nurses and other care providers who may develop relationships over a period of years with groups of families. Health care providers need to r e m e m b e r that information related to diagnosis and management of an individual child should never be shared among families. This can be difficult because family members may compare and contrast the t r e a t m e n t of children, but the professional care giver must adhere to strict limits regarding such disclosures.

Summary The most effective intervention tool for assisting HIV-affected families is the support of a sense of hope. Despite the hopelessness the disease can evoke in health care givers because of its incurability, families respond to optimism and a positive aaitude. It must be remembered that healing is accomplished not only with drugs, treatments, and technology but atso when health care givers reach out as h u m a n beings and offer compassion. Professional caregivers who interact with children and their families in a relationship of mutual trust, partnership, strength, and hope generate nurturance and positive attitudes.

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References 1. Centers for Disease Control and Prevention: HIV/AIDS Surveillance Rep 1994, 5 (no 4), p 11 2. Harvey D, Burr C, Boland M: Pediatric HIV/AIDS Demonstration Projects: Clients Served 1989-91. Newark, NJ, National Pediatric HIV Resource Center, 1992 3. Conviser R: Caring for Families with H1V: Case Studies of Pediatric HIV/AIDS Demonstration Projects. Newark, NJ, National Pediatric HIV Resource Center, 1991 4. Novello A: A Guide: Family-Centered Comprehensive Care for Children with HIV Infection. USHPS: August 1991 5. Sherwen L, Botand M: Overview of Psycbosocial Research Concerning Pediatric HIV Infection. Journal of Developmental and Behavioral Pediatrics 15:$5-S1I, 1994 6. Thorne SE, Robinson CA: Guarded alliance: Health care relationship in chronic illness. ImageJ Nurs Sch 2 I:153-157, 1989 7. Boland MG, Santacroce SJ: Nursing Roles in Care of Child and Family, in Pizzo PA, Wilfert CM (eds): Pediatric AIDS. Baltimore, MD, Williams & Wilkins, 1994, pp 785-808 8. Grady C: Ethical Aspects, in Flaskerud JH, Ungvarski P (eds): HIV/AIDS A Guide to Nursing Care. Philadelphia, PA, Saunders, 1992, p 435 9. Hamburg MA, Fauci AS: HIV Infection and AIDS: Challenges to Biomedical Research, in Gostin LO (ed): AIDS and the Health Care System. New Haven, CT, Yale University Press, 1990, pp 17l - 182 10. Chadwick EG: Issues of Daily Life: Day Care, Foster Care, and School Attendance, in Pizzo PA, Wilfert, CM (eds): Pediatric AIDS. Baltimore, MD, Williams & Wilkins, 1994, pp 551-561 11. American Academy of Pediatrics: Infants and children with acquired immunodeficiency syndrome: Placement in adoption and foster care. Pediatrics 83:609-612, 1989 12. Centers for Disease Control: Update: Universal Precautions for prevention of transmission of human immunodeficiency virus, hepatitis B virus, and other bloodborne pathogens in health care settings. MMWR, 37:A6-109-116, 1988 13. National Pediatric HIV Resource Center: Getting a Head Start on HIV: A resource manual for enhancing services to H1V-affected children in Head Start. Newark, NJ, 1992 14. American Academy of Pediatrics Task Force on Pediatric AIDS: Education of children with human immunodeficiency virus infection. Pediatrics, 88:645-647, 1991 15. Palfrey JS, Fenton T, Lavin AT, et al: Schoolchildren with HIV infection: A survey of the nation's largest school districts. J Sch Health, 64:22-26, 1994 16. Journal of School Health: Supports for children with HIV infection in school: Best practice guidelines.J Sch Health 64:33-36, 1994 17. Walsh ME, Bibace R: Developmentally-based AIDS/HIV education,J Sch Health 60:256-261, 1990 18. Burr CK, Emery LJ: Speaking with children and families about HIV infections, in Pizzo PA, Wilfert CM (eds): Pediatric AIDS. Baltimore, MD, Williams and Wilkins, 1994, pp 923-936 19. American Civil Liberties Union AIDS Project: Epidemic of fear. New York, NY, 1990 20. Boland MG, Harris D: Living with H1V Infection, in Yogev R, Connor E (eds): Management of HIV Infection in Infants and Children. Chicago, 1L, Mosby-Year Book, Inc, 1992, pp 533-550