Psychological Issues In Pediatric HIV/AIDS Patients

Elizabeth Fischer, Ph.D.
Elizabeth Fischer, Ph.D. is with the Department of Pediatrics at the
University of 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 Population

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 Population

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

Family Issues

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 with HIV.

Isolation

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 Concerns

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.

Summary

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 inevitable.

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 attention.

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 problems.

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Jacksonville Medicine / December, 1999