In one of the largest studies of perinatally HIV-infected youth and perinatally HIV-exposed uninfected youth, a high percentage of youth in both groups met study-defined criteria for at least one behavioral health risk, most frequently a mental health problem and, for the PHIV+ youth, ART nonadherence and mental health problems. A number of youth in both groups also reported substance use (most frequently alcohol) and the onset of sex, including a high rate of unprotected sex. Among the youth with two or more behavioral health risks, the most frequent combination was the onset of sex and current substance use. These results suggest that children born to HIV-infected women, regardless of their own HIV status, are at risk for multiple behavioral health risks that require consideration in prevention and health care programs.
Among the behavioral health risks shared by both groups of youth, mental health problems were the most prevalent for both PHIV+ and PHEU youth; roughly one third of youth met criteria for caregiver- or self-reported mental health problems that were in the at-risk or clinically significant category on the BASC-2. It is difficult to compare our data to other studies given differences in measures and criteria. However, the prevalence of mental health problems in our study is greater than expected relative to surveys in the general population,28,29
but comparable to the few studies of children living with perinatal HIV infection or uninfected children living with HIV-infected caregivers.30–32
Mental health problems during adolescence place youth at heightened risk for chronic mental health disorders in adulthood, as well as sexual risk behavior, and thus, require early identification and appropriate, evidence-based interventions to promote youth health and mental health, as well as prevent sexual risk behaviors that can lead to HIV transmission. These mental health problems may not be easily detected in a health care provider's office. Our data suggest that incorporating routine mental health assessments into health care systems may be critical to the early diagnosis and treatment of mental health problems as well as prevention among those at risk.
The proportion of youth who had initiated sex or substance use was lower than that reported in many studies of high-risk populations (e.g., runaway youth, youth with psychiatric disorders),33,34
and considerably lower than the proportion observed among youth with behaviorally acquired HIV who are typically older and, by definition, have already engaged in sex or substance use.35
Our results correspond with recent investigations of PHIV+ and PHEU youth in whom initiation of sexual behavior and substance use was delayed compared to the general population.7,9,36
These data, in combination with the finding that approximately 70% of participants did not have abnormal BASC-2 composite scores, suggest that despite the likely presence of significant stressors in their lives (e.g., maternal HIV, poverty, family disruption), protective factors that support mental health and prevent early onset of sexual behavior and substance use may be present among many families of PHIV+ or PHEU youth. Further study of resilience is necessary to identify protective factors (e.g., social support, family involvement), with the goal of developing effective prevention programs.
Conversely, among the relatively small percentage of PHIV+ youth who had initiated sex, the rate of unprotected sex was very high (65%) and mean age of onset was young (13 years for PHIV+ and 12 years for PHEU). Furthermore, among PHIV+ youth, ART nonadherence occurred frequently, in the context of detectable viral load, placing these youth at risk for immune suppression and resistance to ART. Thus, there is a subgroup of PHIV+ youth who are initiating sexual behavior early and engaging in unprotected sex. Coupled with high co-occurrence of ART nonadherence leading to a detectable viral load and mental health problems that may impair judgment, unprotected sex poses a high risk of transmission of HIV to sexual contacts.
These findings underscore the need to focus interventions and services for PHIV+ youth on promotion of positive health outcomes and prevention of secondary HIV transmission to their sexual partners. Also, the clustering of behavioral health risks, especially in the context of inadequately controlled viral load, suggests that models of care that integrate mental health, HIV transmission prevention, and health care services are critical, particularly as the majority of PHIV+ youth in the United States age into adolescence and young adulthood. Pediatric HIV/AIDS programs for perinatally infected youth often integrate these services37
; however, adult programs do not necessarily have these resources, which becomes an issue as PHIV+ youth transition to adult care systems.4
Moreover, few efficacy-based interventions that integrate services, targeting co-occurring behavioral and health risks have been developed for children or adults living with HIV. One such program, the Healthy Living project for HIV-infected adults, addresses each of these areas in one integrated intervention program that has proven effective in a large multisite clinical trial,38
and one program for children is currently being evaluated.39
Interestingly there were few differences between PHIV+ and PHEU youth. Both groups had similar rates of each of the behavioral health risks, and similar odds of meeting study criteria for two or three behavioral health risks compared to none. Thus, our results highlight the behavioral needs not only of PHIV+ but PHEU youth as well. PHEU youth presented with relatively high rates of mental health problems and, among the sexually active, high rates of unprotected sex. We are close to eradicating perinatal HIV infection in the United States through the widespread use of ART during pregnancy and childbirth.40
However, as long as HIV disease continues to affect women, a significant population of youth will continue to be born perinatally HIV-exposed. A number of other studies have also shown that this population of youth is at high risk for mental health problems as well as sexual risk behavior.6,41
Unfortunately, HIV-exposed but uninfected youth are often difficult to identify and monitor. They are not followed in comprehensive HIV care clinics, unless they enroll in a limited number of studies such as this one. HIV-infected parents receive medical care in adult HIV clinics that do not typically identify the emotional and behavioral risks of their patients' children. Although PHIV+ youth may have increased access to a range of psychosocial services through their medical clinics, these services may need to be extended to the uninfected children of mothers with HIV-infection, as has now been suggested by the results of several studies.41,42
We identified only two independent demographic predictors of the co-occurrence of risk behaviors. As in studies in other populations, older age was a significant predictor of behavioral health risks for both HIV-infected and HIV-exposed youth.22
Also, among PHIV+ youth, those with biological mother as the primary caregiver were over three times more likely to have two or more comorbidities than those with a relative or nonrelative primary caregiver. The stress of maternal illness, including birth mothers' own comorbid health, mental health, or substance abuse conditions,3,43
may compound the effects of the youth's own HIV infection. Longitudinal studies are needed to disentangle the effects of caregiver and youth HIV infection on PHIV+ youth as well as the myriad other determinants of youth behavior. Moreover, studies are needed to identify potential mediators of this relationship, such as social support or caregiver mental health. That said, there is clearly a need for the development of multilevel family-based interventions to support HIV-infected women and their children, whether infected or not, as there are few efficacy-based interventions available and few service models that have been tested. There is also a need for such interventions for PHIV+ and PHEU youth living with a range of primary caregivers, as behavioral risks were identified among youth living with non-birth parents. Additionally, results indicate that some youth require more intensive services, while others are well-served with consistent monitoring, similar to the pediatric psychology preventative health model as developed by Kazak44
for families coping with a recent cancer diagnosis.
There are several limitations to this study. This is a convenience sample. The participants were recruited from HIV primary care clinics and most had participated in previous research studies. Although each study site attempted to recruit all eligible participants and study sites represent a large number of United States-based locations with high HIV seroprevalence, the sample may not fully reflect the larger population of PHIV+ and PHEU adolescents. For example, research studies require regularly scheduled study visits and thus we may have recruited participants more highly compliant with medical care or better supervised by caregivers, and thus underestimated non-adherence or sexual and drug risk behaviors. Although recruited from the same clinics, there were some demographic differences between the PHIV+ and PHEU youth and there may have been other differences unaccounted for in this study. PHIV+ youth were less likely to be living with a birth parent, although this is likely associated with their infection status. As described elsewhere,45,46
because the odds of perinatal transmission of HIV increase with maternal illness (i.e., higher viral load), the PHIV+ youths were more likely to have had sicker mothers who were more likely to transmit the virus and may have died earlier with the limited treatment options available when many of these children were born.
An additional limitation is the relatively lower ACASI completion rate among PHIV+ youth. However, when we restricted our analyses to those sites with low refusal rates (resulting in the exclusion of one outlier site which comprised 60% of all refusals), our results remained substantially similar to those from our primary analyses. Additional limitations include the use of cross-sectional data that reduces our ability to assess the temporal relationship between study variables, and issues of social desirability related to self-report instruments, particularly around topics such as mental health, sex, substance use and adherence. However, the use of the ACASI has been demonstrated to reduce social desirability bias.47
Also, our caregiver- and self-reported adherence measures were significantly associated with viral load.
It is important to note that our sample was relatively young (mean age of 12 years) which may have resulted in relatively low rates of some behavioral health risks. These young adolescents may not have engaged in many sexual and drug risk behaviors that typically emerge during middle or late adolescence. Moreover, relatively few of these youth reported same-sex behavior. Psychiatric disorders that more typically emerge in late adolescence or young adulthood might not be present or may be at subthreshold levels for diagnosis. Younger adolescents are likely dependent on their caregivers for medication management and thus adherence may be better than observed in studies of older adolescents.48,49
It will be important to follow these youth into older adolescence and young adulthood when more youth begin to report increased sexual behavior, including same-sex behavior, increased alcohol and drug use, and increased responsibility for their own health care, all of which may result in increased behavioral health risk, as has been noted in studies of older adolescents and young adults who acquired HIV through sexual or drug use behavior.22,50
Despite potential differences between youth with perinatally acquired HIV and those who acquired HIV through sexual or drug use behavior, it is possible that as PHIV+ youth age into older adolescence, their needs for intimacy and a healthy sexual life, experience of stigma, need for disclosure of a highly stigmatized and transmittable illness, and difficulties with life-long ART adherence and less family supervision will become similar to young people with behaviorally acquired HIV, warranting similar interventions. Although the perinatal HIV epidemic is diminishing in the United States, this is not true internationally. Future research on intervention and prevention programs for adolescents and young adults in both transmission groups are critically needed to help with transmission prevention, reproductive health, life-long adherence, mental health, and overall quality of life.
In summary, our findings suggest a significant need for targeted service programs for both PHIV+ and PHEU youth, particularly those that address mental health problems, safe sex behavior, and nonadherence. There are now a number of studies that have identified important predictors of the behavioral health risks assessed in this paper, including cognitive function,51,52
caregiver supervision and monitoring,53–55
caregiver mental health,11,56
and parent–child relationship factors,11,55–57
many of which could be targeted in these services. To date, only a few efficacy-based interventions have been developed that target caregiver–child relationship factors as well as supervision and monitoring to support mental health and reduce risk behavior in PHIV+ youth and youth living with HIV+ caregivers,39,58
as well as nonadherence in PHIV+ youth39,59
and none of the interventions developed for PHIV+ youth have been tested in large scale randomized control trials. Further study using prospective cohorts may be necessary to identify specific psychosocial mediators among older youth that could be targeted in interventions for multiple behavioral health risks among adolescent children of HIV-infected women, particularly HIV-infected adolescents.