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Pediatrics: The Emerging Psychosocial Challenges of the AIDS Epidemic
Lori Wiener, Ph.D., Howard Moss, Ph.D., Robert Davidson, M.S.W., and Cynthia Fair, M.S.W., M.P.H.
A B S T R A C T : HIV has a pervasive and profound effect on the psychological,
social and neuropsychological functioning of infected infants, children and their families. This article discusses direct and indirect psychological manifestations of HIV in children. Direct effects are the outcome of the virus acting on the central nervous system and can result in compromised cognitive, language, motor, socio-emotional and motivational functioning. Indirect effects involve psychological responses to the stress of living with a life threatening illness, the social ostracism, disruption in life goals and undergoing frequent invasive and protracted medical procedures. A major focus of this article is to outline and describe a model comprehensive psychosocial support system developed within the Pediatric Branch of the National Cancer Institute. This includes early intervention issues and strategies for working with families during the introductory phase of the treatment program that also provides the framework for a care management approach, salient mental health problems that frequently occur in this group, and appropriate interventions for individuals and families. Attention is also given to dealing with anticipatory loss and bereavement, implementing traditional innovative intervention techniques, and for providing advocacy services concerning possible legal, financial, housing, and educational issues. H u m a n i m m u n o d e f i c i e n c y v i r u s (HIV) in i n f a n t s a n d c h i l d r e n is alr e a d y k n o w n to be a d e v a s t a t i n g disease, h o w e v e r t h e t r e m e n d o u s i m p a c t on t h e psychological, social a n d n e u r o p s y c h o l o g i c a l functionDr. Wiener is Coordinator, Pediatric HIV Psychosocial Support Program, National Cancer Institute. Dr. Moss is connected with the Medical Illness Counseling Center, Bethesda, Maryland. Mr. Davidson is a senior social worker, National Institutes of Health and Ms. Fair is a social worker, National Institutes of Health. Address communications to Dr. Wiener at Pediatric H1V Psychosocial Support Program, National Cancer Institute, Pediatric Branch (NIH) Bldg. 10, Rm. 13N240, 9000 Rockville Pike, Bethesda MD 20892.
9 1992 Human Sciences Press, Inc.
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ing of children has received less attention (Belfer, Krener, & Miller, 1988). With the expanding availability of antiretroviral agents to treat this disease and the development of procedures to control serious secondary infections, children are living longer and the disease has become a more chronic illness. The cumulative losses and psychological burden this places on families requires our immediate intervention (Belfer, Krener, & Miller, 1988). Even after a cure is found, social workers will be in an essential role to help mitigate the catastrophic effects this disease will have on children, families and our society as a whole. Unlike virtually any other illness afflicting children, this infection challenges the integrity of the family unit. Family members struggle with the unique social stresses associated with this disease, including public fear and ignorance regarding the nature and transmission of HIV, discrimination, isolation, social ostracism, stigma, and fear of physical and mental disability. Furthermore, many of these families are economically vulnerable and have limited access to such services as housing, transportation, and adequate health care. Over 80% of families of HIV-infected children are from minority backgrounds (Rogers et al., 1987). The majority of families have a history of drug dependence or exposure to drug users and there is generally more than one member in the family who is either infected or ill (U.S. Public Health Report, in press). In addition, all too frequently, families lack the support of the very communities that traditionally have rallied around the care and support of children facing life-threatening illnesses (Pizzo, 1990). This article is designed to be a practical document useful to social workers in many types of settings. The information is presented in two sections, both of which focus on the social worker's role in helping the HIV-affiicted family. In the first half of this paper, the direct and indirect psychological expression of HIV on children will be outlined, so that as clinicians we will be able to assess whether changes in a child's behavior is a result of psychological stress or the effects of the virus on the central nervous system. It has also become clear that comprehensive psychosocial support is essential in order to meet the complex biopsychosocial needs of HIV-infected children and their families. Such an approach was developed on the Pediatric Branch of the National Cancer Institute and this model, which utilizes a case management and multidisciplinary approach with an emphasis on empowering families will be described in the second section of this article.
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The Psychological Expression of HIV Infection and AIDS
A variety of psychological changes and behavioral reactions have been noted among HIV-infected children (Moss et al., 1989, Davis et al., 1987, Brouwers et al., 1989, Wolters et al., 1989). Some of these psychological manifestations of HIV have been identified through systematic studies whereas others are based on clinical and anecdotal observations. Impaired psychological test performance among HIV infected children has been recognized as a sensitive indicator of the presence and severity of the disease, and, conversely, reversal of depressed psychometric test scores have been used as evidence of the efficacy of antiretroviral treatment (Pizzo et al., 1988). The HIV infection may effect the psychological functioning of children both directly and indirectly. Direct effects imply that there is a neurobiological basis for any HIV related impairment of psychological behavior. Encephalopathy is the diagnostic term most frequently used to characterize the direct effects of the HIV infection on the central nervous system. Indirect effects refer to attitudes, feelings, stresses and disruptions in psychological functioning as a psychological reaction to the disease. The degree and form of both the direct and indirect effects of the virus on psychological behavior are often influenced by the age or the developmental level of the child. Social workers, along with psychologists who perform psychometric testing, have the opportunity and ability to help differentiate between the direct and indirect effects of the disease on psychological adaptation and in the development of appropriate psychological interventions. (See Table 1.) The following summary will highlight some of the current findings and information concerning the relation between HIV in children and their psychological behavior.
Underlying the direct effects of the disease on psychological functioning is evidence that the HIV virus is infecting and impairing the central nervous system (Belman et al., 1986, Epstein et al., 1987). This evidence consists of structural changes in the central nervous system (CNS) based on findings from neuroimaging procedures, the presence of antigens and elevated markers of HIV in the cerebral spinal fluid (CSF) and abnormal metabolic activity in the brain (Pizzo et al., 1988, Belman et al., 1986, Epstein et al., 1987). The types of behaviors that appear to be directly impaired by the HIV infection of the CNS are language, social and emotional responsiveness, a range of
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TABLE 1 Direct a n d Indirect Effects of HIV on P s y c h o l o g i c a l Functioning
Mediating Events Direct Effects 1) HIV related CNS disease
Behavioral Outcomes 1) Decline in cognitive abilities 2) Flat affect 3) Loss of expressive language 4) Decreased interest in activities 5) Agitation 1) Distractibility 2) Poor school performance 3) Hyperactivity tics 4) Depression 5) Sleep disturbance 6) Behavior regression
1) HIV related stress 2) Social alienation 3) Family disorganization 4) Chronic tension 5) Physical debilitation
cognitive skills reflected by lowered IQ scores, and impaired attention, memory and visual motor integration and a loss of gross motor functioning, particularly involving the lower limbs. The effect of the HIV on fine motor skills is less clear. With younger children, in particular, one sometimes sees a regression or loss of developmental milestones, such as in speech and walking. It is not uncommon therefore, for HIV-infected children to present, or develop, difficulty in expressive language and in locomotion. Some of the social and emotional changes that have been observed as a direct effect of the HIV are as follows. Interactions and communications with others become minimal. This is often observed as an abrupt change from previous behavior. The child will often stare vacantly ahead, not smile, gaze avert, and appear to be withdrawn. Responsiveness to overtures from others is greatly reduced. Sometimes
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agitated behavior, restlessness, and motoric impulsivity occurs. In one extreme case an infant cried when held and quieted when put in the crib. Motivational behavior also appears to be greatly altered. Children appear to lose interest in objects, events andpeople. There is little sustained, purposeful, goal directed behavior. Tasks are responded to in a perfunctory, detached and disinterested manner. Facial expressiveness tends to be invariant and impassive. A significant reduction in speech and diminished cognitive functioning often accompanies these social and emotional changes. What is described here are some of the more extreme behavioral manifestations of HIV encephalopathy. However, all gradations of the clinical spectrum, from slight to severe, can be observed. The movement toward earlier interventions in the t r e a t m e n t of the disease and the emerging availability of alternative treatments seem to be factors that m a y have reduced the incidence of some of the more severe cases of encephalopathy. Furthermore, the use of antiretroviral drugs, such as AZT can result in dramatic remission of these symptoms. The fact that CNS evidence is often present and that these symptoms have been observed to be responsive to drug therapy supports the strong likelihood that they are of an organic origin (Pizzo et al., 1988). Extreme encephalopathy, involving the full range of behavioral domains, has been observed more frequently among infants and young children. In one study, observers using a behavioral rating procedure tended to describe encephalopathic younger children as exhibiting autistic-like symptoms and encephalopathic older children as appearing to be depressed (Moss et al., 1989). This clinical picture is important for social workers to be aware of in terms of identifying encephalopathic changes and/or differentiating between encephalopathy and clinical depression. The following vignettes will further illustrate this point:
Encephalopathy A twelve year old boy presented as apathetic. He exhibited no affect, had a "glazed" expression, stared ahead, exhibited diminished speech and was minimally responsive to others. This was in marked contrast to his behavior at any other time in his life. He recovered from this "seemingly depressed" behavior after a course of retroviral therapy. That is, he became sociable, exhibited positive affect and was verbal, attentive and responsive to others. Depression An eight year old girl exhibited behavioral regression and withdrawal at the time her mother became seriously ill (from HIV) and died. In fact, a hearing test was ordered as she did not always respond when
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people were talking to her. She is an extremely bright child and had been very cooperative. She started to show resistance, testing of limits and depressive content in her drawing of a "girl". She first drew the girl with flowers and the sun, and then stated "here comes the clouds" and drew rain drops that she stated were tears. Even though she appeared to be emotionally shaken, with much support she remained accessible and responsive to staff (as described by psychologist, Pare Wolters). Cognitive deficits, based on IQ scores, appear to be one of the more sensitive and well documented psychological indicators of HIV encephalopathy. The degree of cognitive impairment is probably commensurate with the severity of the CNS infection with the virus. IQ scores that are more than 10 points below the child's expected IQ are usually needed to be confident that the loss in IQ points probably exceeds normal test-retest variation. However, some children may show a drop of 25 or more IQ points as a result of CNS compromise from the virus. In order to determine whether a child's IQ has already declined when first seen it is necessary to estimate the pre-illness scores from information on family and environmental background factors, or if available from scores obtained prior to the HIV infection. IQ declines associated with the virus are often more precipitous and steeper among infants and young children. It is not clear if this steeper loss in IQ among these younger patients has to do with increased vulnerability or because they were infected at a more critical developmental stage of cognitive growth. Although the HIV infection of the CNS usually appears to be associated with declines in IQ this is not always the case. Occasionally children with CNS related HIV infection will exhibit aberrant behavior while their intellect appears to remain intact as the following case describes. An eleven year old boy had been functioning within the average intellectual range and had been behaving normally. Rather abruptly, he started to exhibit atypical and somewhat bizarre behavior. He became agitated, extremely restless, exhibited rapid and frenetic speech and compulsive behavior (picking his skin, picking up and fidgeting with objects) and had difficulty concentrating. Tests administered at this time showed that his intellectual abilities remained unchanged. There was "significant" increase of HIV in his CNS at this time and he died soon after. Conversely, significant losses in cognitive functioning can occur in the absence of serious alterations in social and emotional behavior.
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I n d i r e c t Effects
Indirect psychological effects from HIV refers to the fears, anxieties and emotional and behavioral reactions to living and coping with the myriad of stresses associated with having AIDS. The stresses that are experienced vary somewhat as a function of the age of the child, the available support systems, the child's adaptive resources and specific life circumstances, such as how many other family members may also be HIV infected. Most school age children are aware that they have AIDS and that this is a fatal disease. Living with a life threatening disease, witnessing the loss of other HIV-infected children they have come to know well is an enormous burden to bear, particularly at this young age. Many of the younger children are anxious about death because they perceive this as an event that separates them from family, friends, and loved ones. This separation anxiety may be ameliorated for some children by a family belief system that includes a belief in an after life in which one is reunited with others. A phobic attitude exists in many communities concerning AIDS. Children can be ostracized, rejected and humiliated if their illness becomes publicly known. Certainly some school systems have prevented these children from participating in regular school activities. These circumstances often result in a sense of shame and feelings of being a pariah. Some communities are more enlightened and respond more positively to these children. However, when this is not the case the stress can be severe. In order to avoid the potential humiliation, disgrace and persection over being exposed, children with AIDS are sometimes further burdened with carrying this as a "terrible secret" which often results in withdrawal from friends and age appropriate activities. The protracted and often invasive medical treatments they have to undergo and the constant threat of serious opportunistic and debilitating diseases (in some instances blindness) is another monumental stress heaped on these children. Many of these children exhibit delayed growth. The resultant disparity in height from their peers is an additional basis for potential anguish as well as a constant reminder that they are different from their peers. Some forms of stress derive from the child's personality and the way he or she construes events. We have heard some children express guilt for the pain and disappointment they have inflicted on their parents by being ill. Other
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children have such a strong need to protect their parents from further hurt and suffering that they do not tell them when they are frightened (especially of dying) or in physical pain. Vertically infected children have extraordinary additional problems to cope with since their mothers, and possibly other family members, are also infected. This situation means that parents may become so compromised by the disease that parenting skills are impaired and ultimately they may die. In addition, the majority of children born to HIV positive mothers live in single parent families and are experiencing poverty, deprivation and social isolation. The ability of these children to cope with the formidible set of stresses and challenges that face them is a function of their adaptive capacities, ego strength, family and community support systems, and the health care resources available to them. However, the children as a group show remarkable resilience. Outwardly, most of them carry on with their daily lives in an ordinary fashion. When well, they attend school, play with friends, enjoy games and pursue hobbies and activities that are appropriate for their age group. Those that are not encephalopathic exhibit the spontaneity, affect, and interpersonal behavior that one would anticipate from a non-infected group of children. This does not mean that they are not hurting, struggling and searching for answers inwardly. But they bravely seem to be coping and getting on with their lives. Evidence of the stress and tension HIV-infected children undergo may be expressed indirectly. A moderate number of these children exhibit levels of hyperactivity and attentional deficits that are sufficient to interfere with school performance. Although it is probable that the incidence of these behaviors exceeds the base rates for these problems in the general population not enough data is available to make a conclusive statement in this respect. Attentional problems, hyperactivity and other unmodulated motor acts, such as tics may easily be the expression of the chronic, unremitting tension that these children are experiencing, especially when they need to lie to others about their disease and medications. Also, some of the children exhibit periods of sadness and apparent depression. These children exhibit exaggerations of the underlying behavioral tendencies to either externalize or internalize feelings in reaction to the continuous stress with which they are confronted. As social workers, we need to be sensitive to individual developmental, family, and social needs and creative in our approach to each child's care as the following vignette illustrates:
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David, a 14 year old HIV-infected hemophiliac, was referred for psychosocial evaluation after developing a tic. Upon exploration it became clear to the worker that the tic began soon after his medication schedule was revised. As a result of this revision, David needed to hide in the bathroom at school in order to take his AZT. This behavior was in extreme contradiction to the way he was raised which was to be honest, open and above all never to deceive others or lie. By simply changing the medication schedule so that he did not have to take pills at school, the tic disappeared. (Weiner, 1991) In general the behavioral problems that are observed are not extreme or incapacitating. Furthermore, they are qualitatively very different from the behaviors that are associated with encephalopathy. That is, these children are still very responsive and alert, are invested in activities and in people, are often highly articulate, and seem to be searching for normalcy, and end to this disease and support. Social workers are uniquely qualified to assess each child and family's needs, anticipate psychological adjustment and provide interventions that will help children and families develop positive coping strategies to deal with HIV-related distress and associated dysfunction in the home, in interpersonal relationships, at school, and in the community. Mental health services, when integrated into a comprehensive system of care for children with HIV infection and their families, enhance treatment, help ensure continuity of care, and foster acceptance of children with HIV infection and their families. These are the goals of the psychosocial support program at the National Cancer Institute.
The NCI Psychosocial Support Model
In December of 1986, the Pediatric Branch of the National Cancer Institute began treating HIV-infected children. Since this time we have worked with over 300 children and their families. We were confronted early on with some of the similarities but also the tremendous differences between providing psychosocial support to the family of a child with cancer and to the family of a child with AIDS. Like cancer, AIDS will disrupt the equilibrium of affected families. However, unlike cancer, in most HIV-infected families there is frequently a tenous equilibrium to begin with and there is generally more than one family member who is infected or ill. In addition, most HIV-infected families are already burdened with poverty, discrimination and poor support systems and are already known to multiple social serv-
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Psychosocial Support Program
9E a r l y I n t e r v e n t i o n P r o g r a m
9P s y c h o s o c i a l A s s e s s m e n t 9 Mental H e a l t h S e r v i c e s
- A t time of entry to program -Throughout course of infection - T e r m i n a l Illness -Bereavement
-Individual -Couple -Family -Group (In-house and Telephone)
9Advocacy Services & Interagency Linkages 9Case Management Approach 9E m p o w e r m e n t
-National Telephone Network -Volunteer In-House Program -Host Volunteer Program -Children's Inn
ice agencies when confronted with AIDS. In response, a Pediatric HIV Psychosocial Intervention Program has been developed (Wiener, 1989) (see Table 2) and has been interwoven into the existing services provided within the Pediatric Branch of the National Cancer Institute. The aim of the program is to be child centered, family focused and comprehensive in nature. It has the added goal of empowering families and has been developed and revised based on the perceived and identified needs of the families themselves.
Early Intervention Program
Once the child has been accepted for screening and evaluation, the assigned social worker contacts the family by telephone. The purpose of this call is to assist the family in making necessary arrangements for travel to the medical center, for local housing, to obtain a prelimi-
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nary psychosocial assessment and to assess additional areas of need. For example, many families experience severe stress at the thought of being far from home, fearful that their child will not return home alive, and uncertain whether they are making the right decision in participating in a clinical trial. Public assistance may be able to assist others with the cost of the initial visit, a local AIDS organization may be able to provide a "buddy" to watch the other children while the parent takes the child for weekly blood tests, and free legal intervention may be needed to establish guardianship if the child's parents are unable or unavailable to provide proper care. Therefore, with a family's permission, contact is also made with agencies and social workers who have been of assistance to the family in their home community. A packet of information is then sent to the family which includes information about our branch, the virus, various treatments, and also includes a coloring book which illustrates all medical procedures that will take place during the child's evaluation. Phone contact is maintained prior to the family's arrival. This early intervention model is orchestrated by the social worker and provides the framework for a case management approach to care. It establishes a supportive relationship with families on which to build a long-term partnership between medical and psychosocial care providers within the home community and our medical facility. The social worker is also the first person to meet the family upon arrival. Orientation to the hospital by the same person with whom the family has been in contact reduces anxiety, engages the family in the hospital system, and initiates the process of continuous and consistent care. The family is then prepared for the screening process which determines eligibility for a particular protocol and provides for a more in depth psychosocial assessment. (See Table 3) This assessment is an essentia] ingredient of the program as it helps staff anticipate psychosocia] adjustment and plan for the family's immediate and long term needs.
M e n t a l H e a l t h Interventions
As addressed earlier, children with HIV infection often experience a range of behavioral and psychosocial problems. Since mother and child are often separated, commonly by hospitalization, social workers should be alert for infantile or early depression. Some children, particularly younger ones may exhibit disruptive and inappropriate behaviors, learning difficulties, and even symptoms that simulate autism. Young children are most worried about medical tests and pro-
F a m i l y Constellation Biological as well as adoptive/foster/extended family members:
History of Illness
Route of transmission, history of symptoms
Child's Personality Profile
Preillness 9 Relationship with parents, siblings, peers 9 Functioning in school and play 9 Coping abilities 9 Existing standardized test information 9 Prior losses Current 9 Knowledge and reaction to diagnosis 9 Words used to describe infection 9 Beliefs, attitudes, expectations 9 Coping abilities 9 Ability to deal with separation 9 Energy level, mood 9 Behavioral changes at home, school, play 9 Whether child has told any friends 9 School's understanding of child's situation
9 Family's beliefs, attitudes, expectations regarding illness, treatment, death. 9 Who in the family is aware of diagnosis? 9 Reactions of family members/friends/neighbors. 9 Quality of relationships with extended family members. 9 Coping abilities during previous crises. 9 History of depression and/or nonprescribed drug and alcohol
9 History of previous losses. 9 Nature and stability of residential/occupational arrangements. 9 Sources of emotional and financial support; availability of medical insurance. 9 Cultural/religious beliefs. 9 Health status of all family members. Community Support 9 Involved community agencies 9 Social work involvement
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cedures. School-age children and adolescents may feel isolated and at times experience depression and related disorders. Mental health services can be a significant resource to children with HIV infection and their families. These services can take on many forms (individual, couple, or family counseling), and often compliment one another. For example, a couple who is newly diagnosed may need assistance in confronting powerful issues such as drug use, promiscuity, bisexuality, or infidelity, while an older non-infected sibling would be best served by individual counseling to address fears of abandonment and isolation. Mental health services need to be culturally sensitive and are best utilized when integrated into a comprehensive system of care for children with HIV infection and their families.
Individual. A range of individual therapy interventions are of assistance to family members. For the child, play therapy is often a useful therapeutic modality in providing a structure in which the child can work through feelings of isolation, separation, and abandonment. Play therapy can also provide a safe atmosphere for the child to learn skills in coping with invasive medical procedures while reenacting previous traumas (Wiener & Septimus, 1990). Adolescents also benefit from individual counseling. Counseling with adolescents most often addresses resentment due to dependence on parents and on the medical community at a time when their peers are moving toward a more independent lifestyle. In fact, the most damaging result of HIV on the adolescent is its effect on the formation of relationships outside the family (Tross & Hirsch, 1988). The fear of being rejected by ones' peers is often greater than the fear of dying from the disease. This too can lead to poor school performance, depression, isolation (Wiener & Septimus, 1990), and acting out behaviors. Interventions need to concentrate on helping the adolescent to focus on living for today, within the confines of the diagnosis by identifying strengths and areas of his or her life in which they can be in control and by increasing their support network which will in turn reduce their isolation and achieve a greater sense of independence. Couple and Family. For parents and other family members, supportive and/or insight-oriented therapy may assist in coping with this chronic and debilitating illness and the impact it has on all relationships. Family counseling can pave the way for more open communication between family members, to make family based treatment decisions, and in many cases to plan for future care for the child if/when a parent is unable to continued to provide this care.
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Support Groups. Because so many parents feel they cannot afford the luxury of trust and therefore do not share the diagnosis with most people (including at times their own immediate family) they are faced with living in emotional isolation. Many parents have a strong need to talk or reach out to others confronted with the same situation. Support groups have been effective in providing a forum in which families can share with one another their fears, frustrations, and feelings of hope as well as despair. Group support can help reduce parents' feelings of alienation and provide model ways individuals and families cope with AIDS. It has also been successful in enabling parents to develop a more positive sense of themselves as parents, that is, less helpless and both more proactive and empowered. The Pediatric Branch of the National Cancer Institute runs a family support group three times a week. It is an open-ended group and since the goals of the group are not "therapy" in nature but rather supportive and informative, all parents who are interested in meeting other parents who have an HIV-infected child are invited and encouraged to attend. Grossly disturbed parents or parents who are in a drug induced state are usually excluded until it is felt that their behavior will not disturb the group integrity. Themes in the group include the impact of the diagnosis on their lives, the need to lie to others, isolation, the loss of life as it once was, feelings of responsibility, and the fear of either having to go on with life without their child by their side or the fear of their child having to go on with life without them by their side. Practical advise regarding benefits, talking to family, friends and employers about their diagnosis, and treatment options is also common (Wiener & Septimus, 1990). Our families currently travel from 36 different states within the United States to come for treatment. While the preventative and healing qualities of the group have far-reaching implications (Wiener & Septimus, 1990), providing consistent group support is not possible due to geographic location. Therefore, we have initiated National Telephone Support Groups. There are groups for grandmothers who are primary caregivers, grandfathers, infected and non-infected mothers, infected and non-infected fathers, siblings of infected children and a group for infected children themselves. The groups last from 4 to 6 weeks and the sessions are approximately one hour each week. In order to assess the usefulness of this support modality each session is audiotaped and both a pre-test and a post-test questionnaire are administered. The questionnaires assess isolation and group usefulness in terms of coping strategies. These groups expand
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our ability to counsel and support those living in rural areas with little local support services available to them. They also present a safe avenue of expression for participants not yet ready to talk to others face to face.
Anticipatory Loss and Bereavement Counseling
Family members can also use therapy to address their anticipatory grief which often manifests at the time of diagnosis and continues throughout the child's illness (Macks, 1987). Losses often include the loss of hopes of the family's future together (Boland et al., 1987), the loss of a sense of invulnerability, the loss of financial security, loss of physical well-being, and loss of life as it once was. Anticipatory loss remains a common theme as the children one has gotten to know well die. When another child in the program becomes seriously ill or dies, families who know the child and his or her family are confronted with the seriousness of their own child's illness. The need for immediate and consistent support services at this time is essential. Parents who are themselves infected are encouraged to plan for those they might leave behind whether it be their parents, siblings, partner, or children. They are encouraged to leave letters, a poem, a special piece of jewelry, and when possible, personal videotape messages for those who are most important in their lives. Due to the unpredictable nature of HIV it is not always possible to plan for the child's final days or weeks (Wiener & Septimus, 1990). Support services are critically needed during the terminal phase of a child's illness and after a child's death. Children old enough to know that they are dying benefit greatly from the opportunity to talk about their fears, anxieties, and thoughts about death and separation from their loved ones. Older children often like to leave letters and special items for their parents, siblings and friends. Regardless of the extent to which parents believed themselves to be prepared, the actual death of the child initiates an extended period of grieving that is both intense and slow to resolve (Howell & Martinson, 1989). Regular phone contact between the social worker and family after the child's death allows parents to reflect on the child's life, their relationship and to ventilate and work through feelings of sadness and anger. Periodic contact also allows the social worker to monitor pathological behaviors associated with bereavement such as extreme depression or suicidality. Plans are also underway to conduct a retrospective bereavement study, in an attempt to learn more about the impact of death on the family unit. Participating families will be brought back to the
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hospital on a yearly basis, back to the place where they felt accepted and safe.
Advocacy Services Within a Case Management Approach to Care
Families with one or more members infected with HIV are faced not only with many debilitating medical and psychosocial problems but can also be confronted with a variety of community based difficulties. Pediatric AIDS is often associated with a web of specific social problems such as poverty, homelessness, drug abuse, and lack of needed resources all of which tax the family and challenge the social worker. For example, besides losing health, a good amount of freedom and the eventual probability of life, families may also experience loss of income, educational opportunities, friendship, ability to parent, and the ability to run a household. When they approach various bureaucratic systems for assistance, they frequently find complex procedures, overworked staff and at times hostility. Barriers such as these are enough to discourage many already depressed families from obtaining services they deserve thus causing a sense of distrust, apathy, and further undermining their quality of life. Not only is there a need to coordinate medical care for the child and the family, but also the social services that an individual child and family receive must be integrated into this process. Case management is well known to the social work profession and is the vehicle for coordinating multiple needed services through consistent and complex interagency linkages. (See Figure 1) The case manager's job entails 1) ensuring that children and families have access to all needed services; 2) promoting integrated care by linking medical, developmental, and community social service providers; 3) being an advocate for and liaison between the family and other members of the health care team; and 4) empowering families in the care of their children and themselves (FamilyCentered Comprehensive Care for Children with HIV Infection, in press).
Case Management Approach
Due to the complexity and multiplicity of needs that all families require, each family is assigned a social worker who acts as a case manager. This worker is responsible for identifying, translating and communicating psychosocial needs to the other disciplines involved as well as to the family itself. This requires contact with the patient and family while in clinic and by telephone in the community. This also encompasses frequent contacts with case managers in other agencies
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HIV-Infected Children and Families
Case Management Approach to Care O~.\ .+~ ~ e ~t'o, ~ 'r eS Medica# ~ ,. '-.s 6 Care " - v - - ~ 46:~2nee /ree,,t ,re
Interagency Linkages Toward Comprehensive Family-Based Care
FIGURE 1 who are also involved in the family's care. Not every child and family will need every service listed. The particular constellation of services required by an individual child and family will vary depending on the child and family strengths, physical, emotional and financial needs, and resources (Family-Centered Comprehensive Care for Children with HIV Infection, 1990). Nevertheless, integrated and coordinated services are essential and they fall into the following general categories.
Financial. Many families are already receiving public assistance at the time they learn of their HIV infection. Other parents of HIVinfected children are at risk for loss of income. They may miss work in order to keep medical appointments or to be present during hospi-
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talizations. In addition, this risk increases with the number of family members infected with the virus. Infected parents may find work no longer possible due to their own physical limitations and others have been "laid off," or "fired" by an employer worried about loss of business or the concerns of other employees. Furthermore, public and medical assistance are often difficult to obtain for parents who find themselves unemployed. Even though a child is ill and receiving SSI, for instance, a parent may still need to prove why he or she cannot work. Even though it would seem easy to prove that one is disabled or needs to care for a sick child, it may be an all but impossible task depending upon how the case is presented, the application worded, or the specific state regulations which are based on savings and income level. Parents and child are occasionally found living on just the SSI award to the child. When a family that had previously enjoyed a stable life style loses its income, formerly manageable debts often become impossible to pay. Mortgage companies, department stores, utilities, and hospitals are among the creditors that begin to apply pressure taking a good measure of pride away from the family and creating another loss. The social worker, as an advocate, intervenes in these situations by encouraging families (and thus empowering them) to request, document, negotiate, and appeal negative decisions. When necessary, the social worker will search for and provide the family with emergency assistance in order to meet their immediate financial needs and hopefully, allow them to retain some control.
Legal. Legal intervention is a critical component in the care of HIV-infected children and families. Legal intervention is often needed in order to prospectively plan for the child's health care and custody arrangements (Chachkes, 1987). Assisting parents in identifying future care providers for their children, ensuring a durable power of attorney, arranging legal custody, preparing wills or helping foster families obtain the rights to make medical decisions are best done as early as possible (Wiener & Septimus, 1990). Legal intervention may be needed in other areas as well. Whether it is the employer who denies work to a parent or a school district that denies education to a child--because of the fear of HIV, the family often suffers severe discrimination. The social worker, as an advocate, must first try to help the family members find means to educate and reason with frightened, uninformed people who would deny them their rights. If these attempts fail, however, the worker needs to help
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the family determine if it wishes to exercise their legal rights and, if so, help find a means of action in order to invoke anti-discrimination protections. Local AIDS organizations often have legal services available. In addition, state bar associations, legal aid societies, and many law schools encourage "pro bono" services by both law students and practicing attorneys (Family-Centered Comprehensive Care for Children with HIV Infection, 1990).
Housing. In our experience, housing is one of the most emergent needs of HIV-infected women and children. Most women infected with HIV are poor and have a host of other social problems such as family violence and drug abuse (Family-Centered Comprehensive Care for Children with HIV Infection, 1990). Therefore, their housing arrangements are often tenuous at the onset of illness. A landlord may try to evict the family due to fear of the disease or because the rent is late. As their own infection progresses, parents may become unable to live independently and provide proper care for their children. They become in need of supportive housing arrangements that provide supervised care for the whole family. Still others with HIV infection, including women and children are homeless and live in shelters or in the street (Family-Centered Comprehensive Care for Children with HIV Infection, 1990). Therefore, housing support services are an important component of the case management approach aimed to provide comprehensive services to the family, especially with drug using families. Substance Abuse and Child Welfare. HIV infection in children is inextricably linked to drug use in adults. Drug treatment, when successful, can enable families to continue to care for their infected children at home. It also has implications for the type of care available to the child. In order to treat a child effectively within a clinical trial, one must be able to rely on the input and cooperation of the parents. If a parent is actively using drugs, reliability and cooperation cannot be assured. In the NCI program a child cannot participate if the parent is an active drug user and the family is without the availability of an alternative legal guardian. Therefore, one of the goals of our program is to coordinate drug treatment with the other medical and social services available within each family's home community. When this is not possible, every effort is made to obtain an alternative care provider. Even after drug dependent family members complete their treat-
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m e n t program, the risk of relapse is great due to the enormous stress associated with witnessing the effects of the virus on their child(ren), the death of a child or changes in their own health. Therefore, the social worker must help and encourage parents to continue with drug t r e a t m e n t and other available support programs. However, in m a n y instances, infants and children of drug-addicted parents are referred to protective services and become intertwined in the child welfare system. In such cases, foster care is obtained until their parent(s) can provide a safe home for them. Such out-of-home placements usually entail frequent moves and multiple primary caregivers and are extremely stressful for both the child and parent(s). In some situations, group care m a y be necessary for children awaiting foster or adoptive homes or for those awaiting reunification with their families (FamilyCentered Comprehensive Care for Children with HIV Infection, in press). A number of other services are needed in an attempt to provide coordinated and comprehensive care as the following case example demonstrates: A 37-year-old committed and nurturing mother contacted the social worker in order to enroll her 14 month old HIV-infected daughter on an experimental treatment protocol. Due to ongoing substance abuse which had intermittently interfered with her ability to care for her children, the social worker encouraged the mother to enter a drug treatment program. The mother agreed to do so. As both mother and daughter were well known to the social worker at their local hospital, arrangements for in-patient drug treatment were made in collaboration with her. At the time the family presented to our program, mother was living with a physically abusive boy-friend. This mother had two other daughters each from a different relationship. One was 22 years old, married and living in a different state. The other, 19 years old, was single, actively abusing drugs and living with her maternal aunt. She had a 5-month-old daughter of her own with severe birth defects. Due to medical complications and an unstable and complex home situation this child remained hospitalized until her death at the age of 9 months. Following this child's death, this 19-year-old girl alternated between her mother's home and the street. When living in her mother's house she continued to use drugs and borrow and steal from home in order to support her drug habit. The NCI social worker established contact with the county human resources worker assigned to the family at home and was able to obtain a very clear understanding of the very chaotic environment in which the family was living. This social worker was also able to establish contact with a project that was able to provide an apartment for the
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mother and child in a building just opened to provide housing for families with AIDS. The worker then spoke with the local electric and telephone utilities helping to re-establish services that were being denied to this family because of unpaid bills. The worker was able to find funds to help pay some of the back payments and to negotiate payment plans for the remainder. Despite continued efforts, the 19-year-old daughter refused to enter drug treatment and remains on the streets. During visits to NCI, this mother had been observed to be interested in and motivated toward her child's care although her parenting skills, especially in relationship to providing good nutrition, were lacking. She was able to comply with a rather sophisticated regimen of medication and she was very attentive toward her child's needs. Her local hospital social worker agreed that she had strengths as a parent. Therefore, when Child Protective Services in the family's local community attempted to remove the child from her home because of the mother's abuse of prescription drugs and alleged prostitution, the NCI social worker in concert with the local hospital social worker was able to demonstrate the importance of keeping mother and child together. The local worker was able to coordinate a drug treatment program while both workers provided counseling and education to the mother about HIV and the dangers of unprotected sexual activity. Parent-to-parent networking was obtained through the drug treatment program and through monthly NCI support group meetings. Child protective services was able to provide transportation and child care so that the mother could attend drug treatment and her own medical appointments. The mother was referred to the NCI nutritionist for counseling and a back-up plan consisting of alternative legal guardians through the foster care program was developed. Drug abuse t r e a t m e n t along with well coordinated medical and social services enabled this mother and child to remain together. As this case illustrates, a wide a r r a y of services is essential in order to meet the complex needs of HIV-infected children and their families. However, the services are not effective unless they are linked together. Coordination is the key to these linkages for each individual child and family. It is also essential as we work toward interagency and interdisciplinary partnerships. Coordinating a Multidisciplinary Team Approach The NCI model offers each family a primary team consisting of a social worker, nurse, nurse practitioner, physician, and psychologist. In addition, a variety of attending physicians, pharmacist and recreational therapists are always involved. The extended team meets each morning for "work rounds", a forum to review the preceeding day's patients and to plan for the current day. A weekly meeting, "multidisciplinary rounds" chaired by social work, is also held to re-
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view specific medical and psychosocial concerns. This is attended by the core team as well as staff from other disciplines such as a bioethicist, chaplains, an occupational and physical therapist, and educators. Psychosocial issues play an integral role in the overall picture of the patient and are a major component of planning. Additionally, whenever a new treatment is indicated, a conference is held between the physician, social worker, nurse and parent(s). Parents and older patients are viewed as contributors to any plans and, as it should be, the final decision makers.
Empowering the Family with AIDS
While any serious illness has a profound effect on a family, AIDS has unique effects on family functioning and cohesiveness. Other illnesses elicit support rather than condemnation from representatives of the community and from extended family members. Families often experience a sense of powerlessness in the face of family, school or community reactions to the diagnosis. Parents experience tremendous feelings of helplessness as they watch their child become increasingly ill. Therefore, it is important that families are enabled to participate in medical decisions, share common experiences with other families and maintain as normal a life as possible. Family-to-family support and networking can provide a significant source of support. These support systems can ease frustration, overcome loneliness and end social isolation. Such networks also provide a non-threatening, supportive setting for families to help others by establishing a two-way process that, in itself, is therapeutic and empowering (Family-Centered Comprehensive Care for Children with HIV Infection, 1990). Empowerment is not new to social workers. Mental health services that enable and empower families through strong therapeutic relationships and networking and that combat a sense of alientation are essential. Families also appreciate first hand knowledge of what resources, treatment and information is available on a national basis. This can be implemented through referrals to National Pediatric AIDS organizations. (See Table 4.) Empowerment provides families with new learning experiences and opportunities, motivates change, enhances a sense of efficacy and encourages a sense of hope as the following programs demonstrate (Family-Centered Comprehensive Care for Children with HIV Infection, in press).
National Telephone Network. As stated earlier, families who receive treatment at NCI come from many different geographic loca-
National Pediatric HIV/AIDS Organizations
The Pediatric AIDS Coalition, a coalition of 21 national organizations that advocate for the children, adolescents, families and their caregivers whose lives are affected by HIV infection and AIDS. Staffed by the American Academy of Pediatrics; the National Association of Childrens Hospitals and the National Pediatric HIV Resource Center, the Coalition serves as the pediatric task force for the National Organizations Responding to AIDS (NORA) and advocates before Congress for better laws and appropriations of funds. (Phone 202-662-7460) National Pediatric HIV Resource Center, provides consultation, technical assistance, training & public policy analysis related to the care of children, adolescents & families with HIV infection. The resource center is based in Newark, New Jersey and has a Washington, D.C. office. (Phone 1-800-362-0071) The Pediatric AIDS Foundation, a foundation that advocates to improve and increase basic fundamental pediatric AIDS research. The foundation initiated an Emergency Assistance Program for families which distributed funds to 52 centers throughout the United States. It also has the additional goal of creating a national parent education Program. (Phone 310-395-9051) T h e Foundation for Children w i t h AIDS, Inc., provides a network for professionals working with drug exposed and HIV-infected children and their families. The foundation advocates for quality services for drug exposed and HIV-infected children and their families; promotes and provides innovative, comprehensive, family-centered and community based services for children and families; provides a network for professionals; and disseminates state of the art information about the issues, needs, and services for drug exposed and HIV infected children and their families to professionals, family members, decision and policy makers and the public. (Phone 617-783-7300) Association for the Care of Children's Health (ACCH) is an education and advocacy organization dedicated to promoting family-centered approaches to care for all children. The Pediatric AIDS Campaign/Family-Centered HIV Project is a special initiative designed to increase family-to-family support and networking for families caring for children with HIV infection. Families meet two or three times a year for educational, skill-building, and networking activities, and participate in relevant national, regional, and local conferences and workshops. The Family Network Newsletter reports on upcoming events and provides an opportunity for families to share experiences, information and resources with others. (Phone 301-654-6549)
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tions. They often feel isolated in their home communities and have few resources for emotional support. The National Telephone Network was developed in an attempt to provide family to family networking for all families whose children are receiving treatment at our facility for HIV infection. On an as requested basis, child-to-child, sibling-to-sibling, parent-to-parent, and grandparent-to-grandparent networking is arranged through tele-conferencing. Almost all new families are linked with another family through the telephone network prior to their first visit. This allows families who are facing the prospects of placing their child on a clinical trial the opportunity to talk to parents whose child is already on a protocol. Parents who are placing their child in day care can be connected with parents who have already gone through a similar process. Siblings of infected children can talk to other siblings and share common fears and experiences. Infected children also have the opportunity to talk with other infected children on the National Telephone Network. This modality is also extremely useful for bereaved family members who are without the support of the hospital staff.
Volunteer In-House Program. During the first day of the initial evaluation each family is introduced to a volunteer. The volunteer accompanies the family to various tests and scans which are scattered throughout the hospital. This reduces feelings of helplessness and relieves many anxieties new families have about finding their way around. The volunteer and families o~en develop strong bonds that empower them together to then help other new families entering the program. Host Volunteer Program. The Host Volunteer Program is run by an organization called Pediatric Care. This program recruits volunteers who may only have weekends or evenings available to volunteer. The name of a new family is given to a volunteer who contacts the family when they first arrive at the hospital. Volunteers assist and carry out many different activities with families ranging from giving them a tour of Washington, D.C. on the week-end to taking them to the grocery store or just providing emotional support and company. Families and volunteers often maintain contact with each other aRer the family has returned home and are available as a resource for subsequent hospital visits. The Children's Inn. T h e Children's Inn is a facility within walking distance from the hospital where pediatric patients at the National
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Institutes of Health and their family members can stay. This facility is designed to be a home away from home that allows the family to be with their child while undergoing treatment. Families are able to provide emotional support for each other and for other families in similar situations away from the hospital. Parents share common experiences, hopes and fears. They often develop lasting friendships, strong emotional bonds, and support networks that otherwise would not have formed. Such informal networking has enabled families to help others in time of crisis.
Conclusion The observations that have been described concerning the range of psychological behaviors of pediatric AIDS patients and the program that has been developed are based on a somewhat non-representative sample. All of the children that we have worked with were referred for an experimental treatment program. Many have had supportive and intact families or supportive and dedicated foster parents. Approximately 40% were infected through contaminated blood products whereas nationally 15-20% of all reported pediatric AIDS cases are transfusion related. Therefore, the clinical findings may not all be generalizable to other pediatric AIDS populations with different background and sample characteristics. Moreover, the epidemic is changing. The blood supply is now well monitored and controlled so that in the future there will be very few transfusion related cases. There is evidence that there is an increasing number of adolescents infected through sexual contact and/or intravenous drug use. This will result in a shift in the issues, problems and psychosocial dynamics generated by the AIDS epidemic. This shift will also have major implications for social workers in every aspect of practice from child-care, to mental health, planned parenthood, drug treatment centers, hospitals, community based organizations, legal services, and schools. Clearly no one profession can provide and meet the myriad of needs which HIV-infected children and their families confront. However, social workers, with our ethical mandate to serve the poor and oppressed have unique broad-based training and skills to enable us to provide clinical services, program development, community based programs, case management and advocacy to this rapidly expanding population. Social work leadership must go beyond that of patient
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care and include prevention, outreach and psychosocial research. Clearly, the professional and personal challenges facing us in the 1990's are great but the rewards--especially in the area of personal accomplishment are even greater (Tross & Hirsch, 1988).
The authors would like to acknowledge the invaluable support of Dr. Philip Pizzo, Chief of the Pediatric Branch of the National Cancer Institute for his unyielding support of the mental health of the children, their families and his staff and of Elizabeth DuPont, social work intern for her commitment to this project and careful review of this manuscript.
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Moss, H., Wolters, P., Eddy, J., Wiener, L., Pizzo, P., Brouwers, P. June 1989. The effects of encephalopathy and AZT treatment on the social and emotional behavior of pediatric AIDS patients. Proceedings of the 5th International Conference on AIDS. Montreal, Canada. Pizzo, P., Eddy, J., Falloon, J., Balis, F., Murphy, R., Moss, H., Wolters, P., Browers, P., Jarosinski, P., Rubin, M., Broder, S., Yarchoan, Y., Brunetti, A., Maha, M., Nusinoff-Lehrman, S., Poplack, D., 1988. Effect of continuous intravenous infusion of zidovudine (AZT) in children with symptomatic HIV infection. The New England Journal of Medicine, 319,14,889-896. Pizzo, P. 1990. Pediatric AIDS: Problems within problems. AIDS commentary. Journal of Infectious Diseases, 161,316-325. Rogers, M., Thomas, P., Starcher, E., Woa, M., Bush, T., Jaffe, H. 1987. Acquired immunodeficiency syndrome in children: report of the Centers of Disease Control national surveillance, 1982-1985. Pediatrics, 79,1008-1014. Tross, S., Hirsch, D. 1988. Psychological distress and neuropsychological complications of HIV infection and AIDS. American Psychologist, 43(11),929-934. Waters, B., Ziegler, J., Hampson, R., McPherson, A. 1988. The psychosocial consequences of childhood infection with human immunodeficiency virus. Medical Journal of Australia, 149,198-202. Wiener, L.S. 1989. Pediatric AIDS: the psychosocial dimension within the research setting. In: P. Conway, K. Cook (eds.) Proceedings of the Bi-Regional Conference for Public Health Social Workers in Regions IV and VI. Columbia SC: The College of Social Work, The University of South Carolina, 53-65. Wiener, L.S., Septimus, A. 1990. Psychosocial and consideration for the child and the family. In: P. Pizzo, C. Wilfert (eds.) Pediatric AIDS. Baltimore MD: Williams & Wilkins, 577-594. Wiener, L.S. 1991. School and the HIV-Infected Child with hemophilia. Hemophilia World, 7(1),6-8. Wolters, P., Moss, H., Eddy, J., Pizzo, P. June 1989. The adaptive behavior of children with symptomatic HIV infection and the effects of AZT therapy. Proceedings of the 5th International Conference on AIDS, Montreal, Canada.
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