In a large sample of children and adolescents with perinatal HIV exposure, including both those HIV-infected and uninfected, the prevalence of MHPs was greater than expected relative to surveys of MHPs in the general US youth population (Merikangas et al., 2010
; US Surgeon General, 2001
). These findings are consistent with earlier investigations in which higher than average rates of MHPs were identified among children with chronic illness (Gortmaker, Walker, Weitzman, & Sobol, 1990
; Hysing, Elgen, Gillberg, Lie, & Lundervold, 2007
; Wallander & Varni, 1998
) and, more specifically, among children with HIV infection and those who were perinatally HIV-exposed but uninfected (Bauman et al., 2002
; Gadow et al., 2010
; Mellins et al., 2009
). MHPs place youth at increased risk for poor psychological adaptation throughout childhood, adolescence and adulthood (Reef, Diamantopoulou, van Meurs, Verhulst, & van der Ende, 2009
In our investigation, youth MHPs were significantly associated with aspects of the caregiving environment, including caregiver psychiatric disorder. Psychiatric disorders, such as depression, disproportionately affect women (Nolen-Hoeksema, 1987
), and are common among women with HIV/AIDS (Kapetanovic et al., 2009
; Morrison et al., 2002
; Rotheram-Borus, Lightfoot, & Shen, 1999
). As a result, HIV-exposed children, whether HIV-infected or uninfected, are at increased risk for negative outcomes, including emotional and behavioral problems, poor school and social adaptation, elevated rates of internalizing behaviors, and specific risk for depression (Beardslee, Versage, & Gladstone, 1998
; Cummings & Davies, 1994
; Cummings, Keller, & Davies, 2005
; Leve, Kim, & Pears, 2005
; Pilowsky et al., 2006
; Rutter & Quinton, 1984
Mechanisms that increase risk for child maladjustment associated with maternal psychiatric disorders include heritability, innate dysfunctional neuroregulatory processes, exposure to negative maternal behavior and affect, and the context of stressful lives that are common among women with psychiatric disorders (Goodman & Gotlib, 1999
). In our study, the effect of caregiver psychiatric disorder on the presence of youth MHPs tended to be stronger among children living with biological mothers, who by definition were HIV+. Although genetic and environmental risks cannot be differentiated in this study, perhaps the stress of living with HIV interacts with genetic risk to increase vulnerability to psychopathology in some youth. Alternately, caregivers with psychopathology may overestimate behavior problems, react more negatively to their children’s behavior or are less able to exert a positive socializing influence on their children’s emotional or behavioral development (Renouf & Kovacs, 1994
; Zeman, Cassano, Perry-Parrish, & Stegall, 2006
Other findings highlight the importance of the caregiver-child relationship and the caregiving environment in the psychological adjustment of PHIV+ and PHEU youth, as discussed in earlier studies (Mellins et al., 2008
; Murphy, Marelich, Herbeck, & Payne, 2009
). Reduced caregiver limit-setting abilities, for example, were associated with increased youth MHP risk. In the absence of consistent behavioral guidelines and support from caregivers, children may have difficulty learning and meeting parental expectations, particularly when behavioral or emotional vulnerability is already present. Caregivers’ health-related functional limitations were also associated with higher MHP risk. Children and adolescents, particularly those with a chronic illness such as HIV infection, require ongoing and consistent caregiver support, yet caregivers’ ability to complete normal parenting tasks may be compromised when they themselves experience serious health problems, as suggested by Bauman et al. (2007)
. The family’s ability to access mental health care, when MHPs are present, may be jeopardized as well if caregivers’ health and activities are restricted.
In contrast to earlier reports, we found higher rates of MHPs among PHEU than PHIV+ youth. More than one-third of PHEU youth had MHPs, half of which were clinically significant problems. The risks associated with HIV exposure and living in a family affected by HIV have been described previously (Bauman et al., 2002
; Rotheram-Borus, Lightfoot, & Shen, 1999
). However, to our knowledge, this is one of few studies to report higher rates of MHPs in PHEU than PHIV+ youth. This is a concerning finding, given the growing numbers of PHEU children worldwide. Recent estimates suggest close to 9000 HIV+ women deliver annually in the US (Whitmore, Zhang, & Taylor, 2009
), yet PHEU youth may not easily access the benefits of comprehensive medical and psychological care throughout childhood and adolescence, as do PHIV+ youth who are typically engaged in multidisciplinary medical care since diagnosis (Chernoff et al., 2009
). It is reassuring, on the other hand, that the higher rates of MHPs among PHEU youth in the present study were not related to in utero
exposure to ARVs, which remains the gold standard in preventing perinatal HIV transmission.
Among males, PHEU youth had significantly higher odds of exhibiting MHPs than did PHIV+ youth, while there were no differences by infection status among females. In addition, PHEU youth who identified as Black had almost three times the odds of MHPs, in contrast to earlier studies that demonstrated only small, statistically nonsignificant differences in prevalence of MHPs by race/ethnicity in the general population, especially if other risk factors, such as inner-city residence and poverty, were controlled (Costello, Messer, Reinherz, Cohen, & Bird, 1998
). The pathways for increased MHP risk in PHEU children are multifactorial. Our findings suggest that differential associations between gender and race/ethnicity and MHPs for PHEU versus PHIV+ youth may be among factors involved, and thus warrant further investigation.
Several additional youth factors were associated with MHPs among PHIV+ and PHEU youth, including younger age and lower cognitive functioning. MHPs, such as those indicated by the BASC-2 BSI, may be present and recognized by caregivers during children’s earlier years but dissipate or change over time, as a function of improving self-regulatory processes or appropriate educational, psychological, or psychiatric intervention. The relationship between lower cognitive functioning and MHPs is well-described in the literature (Emerson & Hatton, 2007
; Goodman, 1995
; Rutter, Tizard, Yule, Graham, & Whitmore, 1976
; Wallander, Dekker, & Koot, 2003
). Such a relationship may be mediated by the role of cognitive status in determining children’s vulnerability or resilience in the presence of stressful life conditions (Luthar, 2003
) or social disadvantage (Bradley & Corwyn, 2002
), both of which are common among families affected by HIV. In addition, the biological bases or sequelae of cognitive disabilities may be associated with increased risk for psychopathology (Dykens, 2000
). Future research should attempt to identify the relative impact and interaction of cognitive impairment, social and environmental risk, and biological factors in the development and chronicity of mental health problems in children affected by HIV.
This study is not without limitations. First, the cross-sectional design does not allow us to establish causality between child, caregiver or health factors and the presence of MHPs. Next, approximately 38% of youth had missing caregiver data with observed differences between children with completed versus missing caregiver assessments. However, in sensitivity analyses restricted to children with complete caregiver evaluations, the observed effect estimates remained substantially similar to our main analyses. Also, caregivers may have enrolled their PHEU children because of concerns about their children’s mental health, which could bias results. However, sites conducted extensive outreach and offered enrollment to PHEU children with whom they had a prior or current relationship, including siblings of HIV-infected children and PHEU children who participated in HIV screening during early childhood, living in communities demographically similar to those of HIV+ children. Even with such outreach, it remains possible that this US based cohort does not fully reflect the characteristics of all youth born to HIV+ mothers, limiting generalizability of findings to PHIV+ and PHEU youth living in the US, with access to medical care.
Nonetheless, the results of this investigation advance our understanding of the impact of HIV infection and perinatal HIV exposure, and highlight the dynamic interaction between youth and caregiver characteristics in families affected by HIV. The growing number of uninfected youth with perinatal HIV and ARV exposure provides a strong public health mandate to monitor the development of these children and routinely assess their mental health needs. Appropriate diagnosis and intervention are crucial since untreated MHPs often lead to co-morbidities, including school failure, juvenile crime, substance use, HIV infection, unintentional injuries, violence, and increased mortality, including suicide. Caregivers with psychiatric disorders should be referred for treatment, not only to reduce suffering, but also because successful caregiver intervention will prevent or diminish psychological risk among their children (McCarty, McMahon & Conduct Problems Prevention Research Group, 2003
). Multi-level, family-focused and evidence-based psychological and/or psychiatric intervention services that begin early in life and address both youth and caregiver competencies and needs may be most efficacious and cost-effective (McEwen, 2008
; Sanders & McFarland 2000
). Collaboration with educators and schools is also essential so that children receive the educational and social support that foster development of competency and adaptation in the school and home environments.
While early diagnosis and treatment of MHPs are necessary, prevention of MHPs in families affected by HIV is also an important goal. Health care providers, psychologists, psychiatrists and social workers are positioned to lead efforts that will ultimately foster resilience and reduce intergenerational transmission of psychopathology in families affected by HIV, through culturally sensitive, individualized and targeted mentoring, parenting support, and peer and group support. A number of family-based interventions have been developed for children infected and affected by HIV and may be appropriate models that could be incorporated into health care programs that serve HIV affected adults and youth (McKay et al., 2006
; Pequegnat & Szapocznid, 2000
). Future prospective longitudinal investigations are necessary to elucidate causal factors associated with resilience and the onset and chronicity of MHPs in youth with perinatal HIV-exposure and HIV-infection.