Psychological Issues In Pediatric
Elizabeth Fischer, Ph.D.
Fischer, Ph.D. is with the Department of Pediatrics at the
Florida Health Science Center / Jacksonville.
It has become generally recognized that
acute and chronic medical conditions in the pediatric population have
the potential to bring about a range of psychosocial challenges not only
to patients, but also to family members and health care workers. Of
these conditions, HIV/AIDS presents perhaps the most complex
psychosocial issues of any medical condition. The overlapping of social,
individual, family, financial, cultural, and illness factors poses a
challenge to communities and healthcare teams that strive to provide
comprehensive services to this population.
AIDS in children was first described in
1982. By June 1998, 8,280 children under the age of 13 with AIDS had
been reported to the Centers for Disease Control and Prevention (CDC).1
Ninety-one percent of the cases in 1997 involved perinatal transmission.1
Initial interventions in pediatric HIV/AIDS focused on the medical
urgency and terminal nature of the disease. Understandably, there was
little attention given to long-term psychosocial issues and adjustment.
Improvements in medical treatment, however, have resulted in a decline
in AIDS incidence in both children and adults.1 Recent survey
data presented at the Pediatric AIDS Clinical Trials Group (PACTG)
meeting indicated that the largest group of pediatric HIV/AIDS patients
were children in the 8 to 12 year-old age range who were infected
perinatally.2 The authors additionally reported that 56% of
HIV infected children and adolescents between the ages of 12 and 21 are
long-term survivors. These children, who many predicted would not
survive, are now facing academic, social, and emotional issues related
to living with a chronic health condition.
The need to address the long-term
psychosocial needs of pediatric HIV/AIDS patients has been recognized in
recent years, although there is still little empirical literature
regarding the long-term effects of the disease. There is, however, a
large body of literature dealing with the psychosocial effects of
specific diseases as well as chronic illnesses in general. This research
has suggested that the effects of chronic illness are not limited to the
arena of physical health. Instead, chronic illness tends to impact on
many different areas of a child's life, including school, family,
social, and psychological adjustment.3-5 Research examining
the psychological well being of chronically ill children has been mixed,
but the general consensus is that chronically ill children are at a
greater risk for developing adjustment problems.3 These
adjustment problems have included an increased risk for depressive
symptoms,6 behavioral problems,7 academic
difficulties,8 and feelings of isolation and withdrawal.9
Although chronically ill children
appear to be at increased risk for developing psychological symptoms,
there are a large number of chronically ill children who adjust well to
their illness.3 Given that chronic illness may increase risk
of impairment, but it does not by itself guarantee adjustment problems,
the trend in recent research has been to examine variables that may
moderate risk for emotional difficulties.7, 10-11 Factors
that have been shown to predict adaptation to chronic illness include
family stress, cohesion, and expressiveness.11 Additionally,
socioeconomic status,10, 12 coping style, attributional
style, and social competence10 have been shown to predict
emotional and adjustment difficulties.
HIV/AIDS In The Hemophilia
The literature examining general
psychosocial adjustment specific to pediatric HIV/AIDS has concentrated
on the hemophilia population. As in the research on adjustment to
chronic illness in general, the results have been mixed. Some studies
have found no evidence of maladjustment in children who have hemophilia
and who are HIV positive,13-14 while other studies show that
there appears to be a tendency for these children to exhibit increased
signs of anxiety and decreased social competence according to parent
report.15-16 These results, however, are far from conclusive.
Additionally, it is of interest that results differ depending upon the
source of the report. That is, when children in these studies were asked
directly about their own adjustment, they reported few, if any problems.
On the other hand, when mothers were asked about their child's
adjustment, they reported increased rate of symptoms.13-15
It is of concern that results gleaned
from studies of HIV infected children with hemophilia may not be
generalizable to the general pediatric HIV/AIDS population. HIV
infection through blood transfusions has been almost completely
eliminated at present. The majority of children who are currently being
infected are contracting HIV via vertical transmission.1
While issues related to stigma, secrecy, and the terminal nature of the
disease, as well as multiple family losses, might be similar in both
populations, the general HIV/AIDS population differs in a number of ways
from the hemophilia population.
Studies of HIV infected children with
hemophilia cite participants that are primarily white, middle class, and
who come from two-parent homes.13-15 In contrast, minorities
are over represented in the general pediatric HIV/AIDS population. The
CDC reported that in 1997 58% of children living with AIDS were African
American and 23% were Hispanic. This was in spite of the fact that
African Americans and Hispanics comprised approximately 14% and 11% of
the United States population respectively.1 Many of these
children coping with HIV infection come from low income, urban
environments. Thus, in addition to coping with the effects of chronic
illness they must negotiate the problems associated with poverty. They
may or may not have both parents available, and one or both parents may
be infected with HIV, diagnosed with AIDS, or deceased.17-18
HIV/AIDS In The General Pediatric
Despite the lack of empirical
psychosocial research in general pediatric HIV/AIDS, clinical
observation suggests that this population is at risk for adjustment
problems in a number of areas. These include family issues, isolation,
and neuropsychological and behavioral concerns.17-21
It is important to realize that many
families are coping not only with HIV-related issues, but also with
additional stressors related to inner-city living. These include
poverty, violence, and drug abuse.18 Thirty percent of women
who contracted HIV between 1990 and 1996 did so through injection drug
use (IDU)22 and the majority of HIV positive children
contracted HIV through vertical transmission.1 These facts
suggest that a significant subset of these children is coping with
parent drug use and all of the psychosocial ramifications involved in
such a situation.
Other concerns reported by families
dealing with HIV/AIDS involve interacting with the medical environment
and addressing medical concerns.18 Families must negotiate
financial and insurance difficulties and learn to communicate
effectively with physicians. Additionally, they are coping with
hospitalizations, clinic visits, and important medical decisions.
Caregivers are often required to manage their children's medical
condition as well as their own, and possibly, that of other family
members. The medical regimen associated with HIV/AIDS can be notoriously
difficult to follow. Not only must caregivers adhere to their own
medication regimen, they must convince their children to comply with
medication that tastes bad and pills that are difficult to swallow
because of their large size.
Families dealing with HIV/AIDS are also
faced with concerns of separation and grief. It has been estimated that
as many as 24,000 children in the United States have been orphaned by
AIDS.23 Children who lose a parent must cope not only with
grief over their loss, but possibly with significant disruptions to
their home and family life, such as placement in foster care or the home
of another relative.18,24 Social support and increased age
has been associated with improved grief outcomes,25 and
pediatric HIV/AIDS patients may be lacking on both counts. In the event
of a parent's death, many grandmothers are being called upon to raise
their grandchildren. These grandmothers experience grief regarding the
loss of their own children, as well as the stress of assuming parenting
responsibilities at a late age. Additionally, families are experiencing
multiple losses. HIV/AIDS is unique in its ability to strike multiple
members of the immediate family as well as the larger community, thus
severely compromising traditional social support systems.
Pediatric HIV/AIDS patients who die may
leave behind not only grieving parents, but also grieving siblings. The
topic of children's reactions to sibling death is one that does not
receive widespread attention, but there is evidence that the sibling
relationship is one of the most important social relationships.26
Better family adjustment following the death of a child has been shown
in the oncology literature to be related to open communication and
social support.27 Siblings and parents of deceased pediatric
HIV/AIDS patients may be at risk due to the social isolation associated
Another unique aspect of HIV/AIDS is
the secrecy, stigma, and isolation that accompany it. Despite
improvements in understanding of HIV/AIDS, those who are infected
continue to face possible fear, rejection, and prejudice if and when
their diagnosis becomes known. It is not only friends and community
members who are not told of an individual's illness. Adults who are
infected may not tell immediate family members, spouses, partners, or
children.28 Cultural issues may impact communication
patterns, attitudes toward HIV infection, and willingness to access
social and psychological support systems.
Children are often not told of their
own HIV infection, or that of parents and siblings. Parents have
indicated that they are uncomfortable discussing HIV status with
children for a variety of reasons. One of these is the fear that
children will be unable to keep the diagnosis a secret from peers and
other community or family members resulting in social rejection of the
child and the family.18,28 Parents also report a desire to
protect the child from the knowledge that the parent and/or child has
the illness. This is especially true if one or more close family members
or friends have already died from AIDS. Additionally, parents report
that they are uncomfortable and uncertain how to address questions
regarding how the virus was transmitted to parent and/or child.18
Parents may feel guilty or ashamed about the method by which they
contracted HIV. Mothers, especially, may be trying to cope with their
own feelings in having transmitted the virus to their child.
There is a large body of literature in
pediatric psychology addressing the question of disclosing disease
status to pediatric patients. A great deal of this literature has been
conducted in the area of pediatric oncology. In general, it has been
well established that children have better emotional adjustment if they
are told of their diagnosis and allowed to discuss their condition
openly with their family and medical caregivers. This is true even in
situations where the child is terminally ill.18,29-30
Unfortunately, there is little research
regarding disclosure of diagnosis specific to pediatric HIV/AIDS.
Specifically, research has not been conducted to assess whether concerns
about social ostracism and related psychosocial effects outweigh the
need to discuss the child's (or other family member's) HIV/AIDS
diagnosis. There is some preliminary evidence that children with HIV or
AIDS who were not told of their diagnosis exhibited increased levels of
social isolation as compared to children who knew their diagnosis.20
At present, professionals should attempt to provide families with
information regarding the benefits and consequences of disclosing HIV
status to a child.28 Open communication about health status
is generally considered optimal, but this must be weighed against a
family's concern about social rejection.20 Additionally,
families may request help formulating an explanation that is
developmentally appropriate and answering difficult questions about
disease process, prognosis, and transmission. Situations involving
cognitive or developmental delay may not be appropriate for disclosure
if a child's ability to keep the diagnosis private, or their ability to
understand the situation is impaired.20 Additionally,
disclosure should be undertaken in an environment that is supportive
with adults ready to provide appropriate information and reassurance.
Neuropsychological And Behavioral
Neuropsychological and developmental
impairment associated with HIV infection has been clearly documented in
the literature.31 A thorough discussion of neuropsychological
effects of HIV/AIDS is beyond the scope of this article, but there are a
number of detailed reviews that may be helpful to the interested reader.21,
31 The expression of HIV infection in the central nervous system
(CNS) is variable across children and within children across time.21
Documented symptoms of CNS involvement include attention and
concentration difficulties, language problems (particularly in
expressive language), motor skills deficits, lagging social development,
and failure to achieve, or loss of, major milestones.21,31-32
Children with HIV/AIDS have been
reported to exhibit a number of behavioral and psychosocial difficulties
including hyperactivity, attentional deficits, social withdrawal, and
depression. It is oftentimes difficult to ascertain whether symptoms of
these disorders are behavioral/emotional or neurological in nature.21
Cognitive deficits, learning disabilities, and developmental delay
related to CNS symptoms of HIV infection can directly impact academic
performance. It is unclear to what extent the behavioral,
neuropsychological and developmental deficits are also related to social
circumstances such as maternal HIV infection, impoverished environment
and chronic illness in general.31-33 Careful assessments must
be used to tease apart cognitive, social and neurological contributions
to these problems.
Although there are complex social,
medical and cultural, individual, and family factors surrounding
pediatric HIV/AIDS, there is a paucity of research examining the
psychosocial ramifications of this disease. Evidence from the literature
on chronic illness in general suggests that chronically ill children are
at risk for adjustment problems, but that these problems are not
Much of the psychosocial research in
pediatric HIV/AIDS has been conducted in the hemophilia population. This
research was mixed in terms of outcome with some of the outcome
suggesting no maladaptive psychosocial adjustment, and other studies
finding increased anxiety. These results, however, may not be
generalizable to the current pediatric HIV/AIDS population. The majority
of these children tend to have significant psychosocial stressors in
addition to HIV infection, including poverty and urban living
conditions. In addition, psychosocial factors related to chronic illness
(difficult medical treatment, hospitalizations, clinic visits, and
medical procedures), and HIV in particular may affect these children.
Examples of psychosocial stressors unique to HIV include its method of
transmission, the secrecy and stigma that surround it, social isolation,
and disruption of family and social support systems.
Neurological, cognitive, and
developmental effects of HIV infection in the CNS have received more
research attention than has the area of general psychosocial adjustment.
Expressive language, delayed development, lowered cognitive functioning,
social deficits, and motor deficits have all been documented effects of
CNS involvement. It is important to monitor HIV infected children in
terms of their neuropsychological functioning and development to detect
changes and provide appropriate intervention.
Given that new medical advances are
allowing both children and adults to live longer once infected with HIV,
it has become increasingly important to study the psychosocial effects
of HIV/AIDS. The complexity of psychosocial factors dictate that we look
at both individual and family functioning related to HIV infection.
Affected siblings have been largely ignored in this area. Similarly,
uninfected spouses and caretakers have not received much empirical
With a large number of perinatally
infected children approaching adolescence, issues of adherence,
substance use, sexuality, secrecy, peer relationships, and planning for
the future may become increasingly important. Additionally, there is
great concern over adolescents who are becoming infected with HIV. These
adolescents who are infected with HIV through sexual contact or IDU will
likely have psychosocial issues that are distinct from adolescents who
were perinatally infected. Improved research in these areas will help us
to better understand the psychological effects of HIV/AIDS and position
us to more effectively intervene to prevent and address psychosocial
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