Child and Adolescent Social Work Journal

Volume 9, Number 5, October 1992

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 mani-
festations of HIV in children. Direct effects are the outcome of the virus act-
ing on the central nervous system and can result in compromised cognitive,
language, motor, socio-emotional and motivational functioning. Indirect ef-
fects involve psychological responses to the stress of living with a life threat-
ening 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 Insti-
tute. 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 inter-
ventions for individuals and families. Attention is also given to dealing with
anticipatory loss and bereavement, implementing traditional innovative in-
tervention techniques, and for providing advocacy services concerning possi-
ble 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 al-
r 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 function-

Dr. 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 commu-
nications to Dr. Wiener at Pediatric H1V Psychosocial Support Program, National Can-
cer Institute, Pediatric Branch (NIH) Bldg. 10, Rm. 13N240, 9000 Rockville Pike, Be-
thesda MD 20892.
381 9 1992 Human Sciences Press, Inc.
382 CHILD AND ADOLESCENT SOCIAL WORK JOURNAL

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 se-
rious secondary infections, children are living longer and the disease
has become a more chronic illness. The cumulative losses and psycho-
logical burden this places on families requires our immediate inter-
vention (Belfer, Krener, & Miller, 1988). Even after a cure is found,
social workers will be in an essential role to help mitigate the cata-
strophic 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. Pub-
lic Health Report, in press). In addition, all too frequently, families
lack the support of the very communities that traditionally have ral-
lied 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.
 LORI WIENER ET AL. 383

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 in-
fected children has been recognized as a sensitive indicator of the
presence and severity of the disease, and, conversely, reversal of de-
pressed 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 chil-
dren both directly and indirectly. Direct effects imply that there is a
neurobiological basis for any HIV related impairment of psychologi-
cal behavior. Encephalopathy is the diagnostic term most frequently
used to characterize the direct effects of the HIV infection on the cen-
tral nervous system. Indirect effects refer to attitudes, feelings,
stresses and disruptions in psychological functioning as a psychologi-
cal reaction to the disease. The degree and form of both the direct and
indirect effects of the virus on psychological behavior are often influ-
enced 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 cur-
rent findings and information concerning the relation between HIV
in children and their psychological behavior.
Direct Effects
Underlying the direct effects of the disease on psychological function-
ing is evidence that the HIV virus is infecting and impairing the cen-
tral 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 behav-
iors that appear to be directly impaired by the HIV infection of the
CNS are language, social and emotional responsiveness, a range of
384 CHILD AND ADOLESCENT SOCIAL WORK JOURNAL

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 Behavioral
Events Outcomes

Direct Effects 1) HIV related CNS 1) Decline in cognitive

disease abilities
2) Flat affect
3) Loss of expressive
language
4) Decreased interest in
activities
5) Agitation

1) HIV related stress 1) Distractibility

2) Social alienation
Indirect Effects 3) Family
disorganization
4) Chronic tension
5) Physical debilitation
2) Poor school
performance
3) Hyperactivity tics
4) Depression
5) Sleep disturbance
6) Behavior regression

cognitive skills reflected by lowered IQ scores, and impaired atten-

tion, 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 par-
ticular, one sometimes sees a regression or loss of developmental
milestones, such as in speech and walking. It is not uncommon there-
fore, for HIV-infected children to present, or develop, difficulty in ex-
pressive 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 communi-
cations with others become minimal. This is often observed as an
abrupt change from previous behavior. The child will often stare va-
cantly ahead, not smile, gaze avert, and appear to be withdrawn. Re-
sponsiveness to overtures from others is greatly reduced. Sometimes
 LORI WIENER ET AL. 385

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 re-
sponded to in a perfunctory, detached and disinterested manner. Fa-
cial expressiveness tends to be invariant and impassive. A significant
reduction in speech and diminished cognitive functioning often ac-
companies 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 avail-
ability of alternative treatments seem to be factors that m a y have
reduced the incidence of some of the more severe cases of encepha-
lopathy. 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 likeli-
hood that they are of an organic origin (Pizzo et al., 1988).
Extreme encephalopathy, involving the full range of behavioral do-
mains, 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 au-
tistic-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 encepha-
lopathic 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 "seem-
ingly 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
386 CHILD AND ADOLESCENT SOCIAL WORK JOURNAL

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 en-
cephalopathy. The degree of cognitive impairment is probably com-
mensurate 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 in-
creased 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 asso-
ciated with declines in IQ this is not always the case. Occasionally
children with CNS related HIV infection will exhibit aberrant behav-
ior while their intellect appears to remain intact as the following case
describes.

An eleven year old boy had been functioning within the average intel-
lectual 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.
 LORI WIENER ET AL. 387

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, witness-
ing 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 pre-
vented 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 debil-
itating diseases (in some instances blindness) is another monumental
stress heaped on these children. Many of these children exhibit de-
layed 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 disap-
pointment they have inflicted on their parents by being ill. Other
388 CHILD AND ADOLESCENT SOCIAL WORK JOURNAL

children have such a strong need to protect their parents from further
hurt and suffering that they do not tell them when they are fright-
ened (especially of dying) or in physical pain.
Vertically infected children have extraordinary additional prob-
lems to cope with since their mothers, and possibly other family mem-
bers, 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 experienc-
ing 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 at-
tend 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 be-
havior that one would anticipate from a non-infected group of chil-
dren. 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 suffi-
cient 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 ex-
hibit periods of sadness and apparent depression. These children ex-
hibit 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 sen-
sitive to individual developmental, family, and social needs and cre-
ative in our approach to each child's care as the following vignette
illustrates:
 LORI WIENER E T AL. 389

David, a 14 year old HIV-infected hemophiliac, was referred for psycho-

social evaluation after developing a tic. Upon exploration it became
clear to the worker that the tic began soon after his medication sched-
ule 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 ex-
treme 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 ex-
treme or incapacitating. Furthermore, they are qualitatively very dif-
ferent from the behaviors that are associated with encephalopathy.
That is, these children are still very responsive and alert, are in-
vested in activities and in people, are often highly articulate, and
seem to be searching for normalcy, and end to this disease and sup-
port. Social workers are uniquely qualified to assess each child and
family's needs, anticipate psychological adjustment and provide inter-
ventions that will help children and families develop positive coping
strategies to deal with HIV-related distress and associated dysfunc-
tion in the home, in interpersonal relationships, at school, and in the
community. Mental health services, when integrated into a compre-
hensive system of care for children with HIV infection and their fami-
lies, 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 con-
fronted 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, un-
like 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-in-
fected families are already burdened with poverty, discrimination and
poor support systems and are already known to multiple social serv-
390 CHILDAND ADOLESCENT SOCIAL WORK JOURNAL

TABLE 2

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
9Psychotherapeutic Modalities
-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 Insti-
tute. 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-
 LORI WIENER ET AL. 391

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 as-
sist 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 inter-
vention 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 com-
munity. A packet of information is then sent to the family which in-
cludes information about our branch, the virus, various treatments,
and also includes a coloring book which illustrates all medical pro-
cedures that will take place during the child's evaluation. Phone con-
tact 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 con-
sistent 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 assess-
ment is an essentia] ingredient of the program as it helps staff antici-
pate 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, par-
ticularly younger ones may exhibit disruptive and inappropriate be-
haviors, learning difficulties, and even symptoms that simulate
autism. Young children are most worried about medical tests and pro-
 TABLE 3

Psychosocial Assessment

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
Family History
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
use.
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
 LORI WIENER ET AL. 393

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 (individ-
ual, 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, bisex-
uality, 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 as-
sistance 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 abandon-
ment. Play therapy can also provide a safe atmosphere for the child to
learn skills in coping with invasive medical procedures while reenact-
ing 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 con-
centrate 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, sup-
portive and/or insight-oriented therapy may assist in coping with this
chronic and debilitating illness and the impact it has on all relation-
ships. Family counseling can pave the way for more open communica-
tion between family members, to make family based treatment deci-
sions, and in many cases to plan for future care for the child if/when a
parent is unable to continued to provide this care.
394 CHILDAND ADOLESCENT SOCIAL WORK JOURNAL

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. Sup-
port groups have been effective in providing a forum in which fami-
lies 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 fami-
lies 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 fam-
ily 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 encour-
aged to attend. Grossly disturbed parents or parents who are in a
drug induced state are usually excluded until it is felt that their be-
havior will not disturb the group integrity. Themes in the group in-
clude 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 respon-
sibility, 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, talk-
ing to family, friends and employers about their diagnosis, and treat-
ment 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 chil-
dren 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 question-
naire are administered. The questionnaires assess isolation and
group usefulness in terms of coping strategies. These groups expand
 LORI WIENER E T AL. 395

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 immedi-
ate 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 in-
tense 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 behav-
iors associated with bereavement such as extreme depression or sui-
cidality. Plans are also underway to conduct a retrospective bereave-
ment study, in an attempt to learn more about the impact of death on
the family unit. Participating families will be brought back to the
396 CHILDAND ADOLESCENT SOCIAL WORKJOURNAL

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 prob-
lems 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 in-
come, 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, over-
worked staff and at times hostility. Barriers such as these are enough
to discourage many already depressed families from obtaining serv-
ices they deserve thus causing a sense of distrust, apathy, and further
undermining their quality of life. Not only is there a need to coordi-
nate medical care for the child and the family, but also the social
services that an individual child and family receive must be inte-
grated 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 inte-
grated 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) empower-
ing families in the care of their children and themselves (Family-
Centered Comprehensive Care for Children with HIV Infection, in
press).
Case Management Approach
Due to the complexity and multiplicity of needs that all families re-
quire, each family is assigned a social worker who acts as a case man-
ager. This worker is responsible for identifying, translating and com-
municating 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
 LORI WIENER ET AL. 397

HIV-Infected Children and Families

Case Management Approach to Care

O~.\ .+~ Medica# ~ ,. '-.s 6

~ e ~t'o, ~ Care " - v - - ~ 46:~2nee
'r eS /ree,,t ,re

.o "1 r" 4"; ?o+,.

oN "o5

SOCIAL ~ z~

'Ces ~ Care ~ v ~6o,.,

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 catego-
ries.

Financial. Many families are already receiving public assistance at

the time they learn of their HIV infection. Other parents of HIV-
infected children are at risk for loss of income. They may miss work
in order to keep medical appointments or to be present during hospi-
398 CHILDAND ADOLESCENT SOCIAL WORK JOURNAL

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 busi-
ness 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 en-
couraging families (and thus empowering them) to request, docu-
ment, 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 hope-
fully, 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 identi-
fying 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 fam-
ily often suffers severe discrimination. The social worker, as an advo-
cate, 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
 LORI WIENER ET AL. 399

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 avail-
able. 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 Chil-
dren 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 ar-
rangements 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 su-
pervised 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 im-
portant component of the case management approach aimed to pro-
vide 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 suc-
cessful, can enable families to continue to care for their infected chil-
dren 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 par-
ent is an active drug user and the family is without the availability of
an alternative legal guardian. Therefore, one of the goals of our pro-
gram is to coordinate drug treatment with the other medical and so-
cial 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-
400 CHILD AND ADOLESCENT SOCIAL WORK JOURNAL

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 ex-
tremely 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 (Family-
Centered 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 chil-
dren, the social worker encouraged the mother to enter a drug treat-
ment program. The mother agreed to do so. As both mother and daugh-
ter 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
 LORI WIENER ET AL. 401

mother and child in a building just opened to provide housing for fami-
lies with AIDS. The worker then spoke with the local electric and tele-
phone 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 at-
tempted 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 dem-
onstrate 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 net-
working 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 pro-
gram was developed.
Drug abuse t r e a t m e n t along with well coordinated medical and so-
cial 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 to-
gether. 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 so-
cial worker, nurse, nurse practitioner, physician, and psychologist. In
addition, a variety of attending physicians, pharmacist and recre-
ational 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-
402 CHILDAND ADOLESCENT SOCIAL WORKJOURNAL

view specific medical and psychosocial concerns. This is attended by

the core team as well as staff from other disciplines such as a bioethi-
cist, 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 expe-
rience a sense of powerlessness in the face of family, school or commu-
nity reactions to the diagnosis. Parents experience tremendous feel-
ings 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, over-
come loneliness and end social isolation. Such networks also provide a
non-threatening, supportive setting for families to help others by es-
tablishing a two-way process that, in itself, is therapeutic and em-
powering (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-Cen-
tered Comprehensive Care for Children with HIV Infection, in press).

National Telephone Network. As stated earlier, families who re-

ceive treatment at NCI come from many different geographic loca-
 TABLE 4

National Pediatric HIV/AIDS Organizations

The Pediatric AIDS Coalition, a coalition of 21 national organiza-

tions 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 Asso-
ciation of Childrens Hospitals and the National Pediatric HIV Re-
source 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 re-
source 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 fami-
lies 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 chil-
dren and their families. The foundation advocates for quality services
for drug exposed and HIV-infected children and their families; pro-
motes and provides innovative, comprehensive, family-centered and
community based services for children and families; provides a net-
work for professionals; and disseminates state of the art information
about the issues, needs, and services for drug exposed and HIV in-
fected 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 edu-
cation and advocacy organization dedicated to promoting family-cen-
tered approaches to care for all children. The Pediatric AIDS Cam-
paign/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)
404 CHILDAND ADOLESCENT SOCIAL WORKJOURNAL

tions. They often feel isolated in their home communities and have
few resources for emotional support. The National Telephone Net-
work was developed in an attempt to provide family to family net-
working 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 net-
work 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 chil-
dren can talk to other siblings and share common fears and experi-
ences. 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 with-
out 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 re-
lieves 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 groc-
ery store or just providing emotional support and company. Families
and volunteers often maintain contact with each other aRer the fam-
ily 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
 LORI WIENER E T AL. 405

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 ex-
periences, 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. Ap-
proximately 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 dy-
namics 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, so-
cial workers, with our ethical mandate to serve the poor and op-
pressed 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
406 CHILD AND ADOLESCENT SOCIAL WORK JOURNAL

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).

Acknowledgments

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 chil-
dren, their families and his staff and of Elizabeth DuPont, social work
intern for her commitment to this project and careful review of this
manuscript.

References

Belfer, M.L., Krener, P.K., Miller, F.B., 1988. AIDS in children and adolescents. Jour-
nal of the American Academy of Child and Adolescent Psychiatry, 27,147-151.
Belman, A., Lantos, G., Horowpian, D., Novick, B., Ullmann, M., Dicksen, D., Ruben-
stein, A. 1986. AIDS: Calcification of the basal ganglia in infants and children.
Neurology, 36,1192-1199.
Boland, M., Tasker, M., Evans, D., Keresztes, J. 1987. Helping children with AIDS.
The role of the child welfare workers. Public Welfare, 45,23-39.
Brouwers, P., Moss, H., Wolters, P., Eddy, J., Pizzo, P. June, 1989. Neuropsychological
Profile of Children with Symptomatic HIV Infection Prior to Anti-Retroviral
Treatment. Proceedings of the 5th International Conference on AIDS, Montreal,
Canada.
Chachkes, E. 1987. Women and children with AIDS. In: C.G. Leukefeld, M. Fimlores
(eds.) Responding to AIDS: Psychosocial Initiatives. Silver Spring, MD: National
Association of Social Workers, 51-64.
Davis, S., Halsted, C., Levy, N., Ellis, W., 1987. Acquired immune deficiency syndrome
presenting as progressive infantile encephalopathy. The Journal of Pediatrics,
110,884-888.
Epstein, L., Goudsmit, J., Paul, D., Morisson, S., Connor, E., Oleski, J., Holland, H.
1987. Espression of human immunodeficiency virus in cerebral spinal fluid of chil-
dren with progressive encephelopathy. Annals of Neurology, 21,397-401.
Family-Centered Comprehensive Care for Children with HIV Infection. December,
1990. U.S. Public Health Service Panel on Women, Adolescents and Children with
HIV infection and AIDS. In press.
Greenacre, P. 1959. Play in relation to creative imagination. Psychoanalytic Study of
the Child, 14,16-81.
Howell, D.A, Martinson, I.N. 1989. Management of the terminally ill child. In: P.A.
Pizzo, D.G. Poplack (eds.) Principles and Practice of Pediatric Oncology. Phila-
delphia: JB Lippincott 941-1002.
Macks, J. 1987. Meeting the psychosocial needs of people with AIDS. In: C.G. Leuke-
feld, M. Finbes (eds.) Responding to AIDS: Psychosocial Initiatives. Silver Spring,
MD: National Association of Social Workers, 25-38.
 LORI WIENER ET AL. 407

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 Eng-
land 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 im-
munodeficiency syndrome in children: report of the Centers of Disease Control na-
tional 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 conse-
quences of childhood infection with human immunodeficiency virus. Medical Jour-
nal 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.