The primary objective of this study was to determine if youths with HIV are at differentially greater risk for mental health problems than peers from similar environmental backgrounds. Such concern seems warranted owing to potential biological risk factors associated with a virus that crosses the blood-brain barrier as well as exposure in-utero and prophylactically to potentially neurotoxic antiretroviral medications. Moreover, it is not unusual for caregivers to express concerns and apprehensions about their children some day having to cope with social stigmatization and imagined limitations in personal, social, and professional development. However, contrary to research prior to the era of highly active antiretrovirals suggesting a possible link between HIV infection and mental health issues, our findings generally indicated youths with HIV were not at differentially greater risk for current psychiatric problems (i.e., point prevalence) than peers living in similar environmental settings. This was true whether the comparison group was comprised of uninfected youths who were perinatally exposed to HIV or who were living in a household with an HIV-infected person. Moreover, both caregiver and youth self-reports (which evidenced only modest convergence) suggested that if anything the peer comparisons were generally at greater risk of psychiatric symptoms, particularly aggressive and antisocial behavior and self-perceptions of impairment. This was unexpected given the extensive literature supporting the risk for mental health problems in children with chronic illness.9–12,15
The resiliency of the human spirit is also evident in our impairment data. Specifically, 73% of youths with HIV were not rated, either by themselves or their caregivers, as currently having psychiatric problems that interfered with academic or social functioning, a rate that was comparable to our peer comparison sample (74%). The notion that many children with chronic disease adjust satisfactorily to their life situation is also supported by findings from the juvenile cancer literature.16,17
It is also likely that youths with HIV benefitted from access to medical specialists with demonstrated excellence in HIV management, including referral to relevant mental health care professionals. In its own curious way this disease and its clinical management may have interacted with family environment variables to protect these particular youths with HIV from even greater psychological adversity.
This does not mean, however, that living with HIV was necessarily easy for everyone. The HIV+ group did report higher rates and greater severity of somatization symptoms than the peer comparison sample. In addition, caregiver-reported lifetime rates of intervention indicated that 37% of our youths with HIV had received either a behavioral or pharmacological intervention for an emotional of behavioral problem (vs 22% for peer comparisons) and 44% had been evaluated for special education (vs 32% for peer comparisons).49
These treatment findings suggest that lifetime rates of mental health problems may actually be higher in youths with HIV versus peer comparisons. Moreover, compared with normative data samples, both HIV+ and peer comparison samples manifested greater frequency and severity of co-occurring symptoms, which is consistent with an extensive literature associating environmental and economic disadvantage with differentially higher rates of mental health problems. For example, the most commonly reported disorder in our study sample was attention-deficit/hyperactivity disorder (ADHD), with a prevalence rate of 11% to 12% in both groups of youths according to Clinical Cutoff scores. In a nationally representative study of 3,082 youths aged 8 to 15 years, Froehlich et al50
reported a parent-assessed ADHD prevalence rate of 8.7% for the entire sample, but a higher rate (11%) for the poorest youths.
The substantial percentage of youths in both samples, particularly peer comparisons, who were impaired by their symptoms but not receiving intervention, speaks to the special needs of poor families who may be less well equipped to negotiate the legion of hurdles in obtaining adequate health care. Many children with HIV infection have family histories of substance abuse and/or psychiatric illness and also experience significant loss, family disruptions, and other negative life events, due at least in part to the impact of HIV disease and its sequelae on their families.13,14,51–53
Moreover, simply living in a household with a parent or sibling with HIV may be associated with psychosocial stressors such as the fear of losing a parent, limited or inconsistent social support, not receiving the same amount attention as an HIV+ sibling (whether imagined or real), or conflicted feelings about escaping infection.54–59
In other words, these variables, either individually or in combination with other environmental factors, may have contributed in some way to psychopathology and the relatively higher rates and severity of symptomatology when compared with normative data samples.
The perfect comparison group in pediatric HIV infection is for many reasons an unattainable goal owing to a legion of socio-cultural, disease, and treatment variables. Although we statistically adjusted for relevant background characteristics potentially associated with outcome variables and conducted secondary analyses, it is not possible to prove the null hypothesis. For these and other reasons, convergence of findings across studies with differing methodologies is probably the best strategy for resolving critical issues in HIV infection. In this regard, Mellins et al20
who also used a behavior rating scale to evaluate behavioral and emotional symptoms, also found that 3- to 8-year-old children with HIV (n = 96) and HIV-exposed but uninfected peers (n = 211) did not differ in symptom severity, including ADHD. More recently, however, this same research team reported on rates of psychiatric disorder in the past year ascertained with structured interview in youths (aged 9–16 years) with HIV (n = 206) versus perinatally exposed but uninfected peers (n = 134) recruited from four medical centers.25
They found significantly higher overall rates of psychiatric disorder in youths with HIV (61%) versus peer comparisons (49%), but group differences were not significant for specific disorders with the exception of ADHD: HIV+ (18%) and comparison (8%) groups.
The fact that younger youths in our study who were aware of their HIV status were rated as having more symptomatology than peers who were not aware also appears to support the notion that HIV creates adjustment problems for some individuals. However, other investigators have reported that disclosure may actually contribute in some way to psychological well-being,60
but findings are mixed and study samples are small.61
One of the few studies that actually compared youths' pre- and post-exposure status found that disclosure did not have an adverse effect on quality of life,23
and another investigation reported disclosure did not impact adherence to treatment.24
The findings of this study are subject to several qualifications. Although we designed our study to be representative of the population of youths with HIV served by the Pediatric AIDS Clinical Trials Group (PACTG) network, the participants in this study had well-controlled HIV disease. The majority (59%) had undetectable viral loads, excellent CD4% (73% ≥25% CD4 cells), and only 23% had current or past events of AIDS-defining illnesses. Therefore, our results may not apply to patients who are more adversely affected, not being treated at National Institute of Health or National Institute of Health and Human Development sites funded for clinic HIV research, or to the estimated 3 million children worldwide with HIV living in other countries. Moreover, we limited our sample to youths who had been living with the same caregiver for at least 1 year, which we considered necessary to support the validity of caregivers' reports of child psychiatric symptoms.
The comparison group was comprised of both perinatally HIV-exposed and HIV-affected youths, and it is possible that exposure to the therapies that prevent transmission of the virus could have impacted rates of mental health problems. Exploratory analyses found the two subgroups of peer comparison youths exhibited similar rates, severity, and impairment scores, with the exception of conduct disorder (CD), which was clearly more of an issue for the HIV-exposed but uninfected youths. A satisfactory explanation for this finding is wanting and remains a topic for future study.
Finally, the youths and their caregivers enrolled in this study represented 463 families, of which 371 families (80%) enrolled only a single individual, and the remaining 92 families enrolled two or more subjects. To examine whether this impacted our reported findings, we conducted additional analyses adjusting for within-family correlations in reported symptom severity and symptom cutoffs, obtaining results that were similar to those already presented here.
Youths perinatally infected with HIV do not appear to be at differentially greater risk of mental health problems than peers from similar community and home environments. Lest this somewhat reassuring conclusion be misunderstood, we hasten to emphasize the following facts: our HIV+ group received higher lifetime rates of intervention for mental health problems than the comparison sample, and our prevalence estimates of the later were based solely on one point in time. Therefore, it is possible that the lifetime rates of mental health problems are actually higher in our HIV sample than comparison youths. Moreover, youths with HIV are more likely to come from impoverished backgrounds, and rates of mental health problems are in general higher for individuals living in such environments. Therefore, both youths with HIV and their community-based peers constitute high risk populations. For example, twice and many adolescents in each of the study samples were reported to have experienced an upsetting life event that continued to bother him/her compared with norm samples. Pediatricians and adolescent care providers involved in the management of HIV will inevitably be called on to identify, diagnose, and treat mental health issues and address their implications for intervention, adherence to treatment regimens, and even disease transmission. Moving forward, we emphasize the potentially complex relationship of biological and environmental exposures with psychiatric outcome and the need for continued research. In summary, this is but one in a series of reports that will address various aspects of mental health issues in youths with HIV to include a longitudinal analysis of the role of specific biologic and environmental variables in pathogenesis of mental distress in this at-risk clinical population of largely poor, minority youth.