Claude A. Mellins

Disclosure of an HIV diagnosis to children: history, current research, and future directions.

Disclosing the diagnosis of human immunodeficiency virus (HIV) or AIDS to a child is a controversial and emotionally charged issue among both the health care communities and parents and caregivers of these children. This paper provides a systematic review of research on disclosure of pediatric HIV infection. It begins with a brief discussion of disclosure drawing from research on pediatric cancer. Next, we review the available research including patterns of disclosure, factors associated with disclosure and nondisclosure, and the effect of disclosure on psychological health and adherence. A review of published intervention studies is also included. While no consensus on when the diagnosis of HIV should be disclosed to a child or the psychological outcomes associated with disclosure was found, clinical consensus on several issues related to working with families was identified. We apply this literature to clinical practice and suggest avenues and directions for future research.

Patterns of HIV Status Disclosure to Perinatally HIV-Infected Children and Subsequent Mental Health Outcomes

Increasing numbers of perinatally HIV-infected children are surviving into their teens and beyond. Research and clinical reports suggest that many HIV-infected children, particularly those younger than 13 years, do not know they are HIV infected owing to parental concerns about the impact on their mental health. This study examines patterns of HIV status disclosure to 77 perinatally HIV-infected ethnic minority children (aged 3–13 years), and explores the association between knowledge of HIV status and emotional and behavioral outcomes. The majority of children in this study (70%) did not know their HIV status. On average, children who knew their HIV status were older and tended to have lower CD4%. Child knowledge of HIV status was not associated with gender, ethnicity, caregiver education, parent–child relationship factors, type of placement (biological vs adoptive), or other health status indicators. As hypothesized, HIV status disclosure to infected children did not result in increased mental health problems. There was a statistical trend for children who knew their HIV status to be less depressed than children who did not know. Also, greater social disclosure (e.g. communication of child’s status to family and friends) was found when the child had an AIDS diagnosis or lower CD4%, as well as when the caregiver was HIV negative, African American and not the child’s biological parent. In conclusion, pediatric HIV infection remains a highly stigmatized issue that is difficult to discuss with the infected child and others. Yet, contrary to the beliefs of many caregivers, disclosure did not result in increased mental health problems.

Longitudinal study of mental health and psychosocial predictors of medical treatment adherence in mothers living with HIV disease.

Cross-sectional studies to date that examine psychosocial correlates of antiretroviral adherence have insufficiently addressed the challenges of long-term adherence. This longitudinal study examined mental health, substance abuse, and psychosocial predictors of long-term adherence to antiretroviral medications and medical appointments among HIV-seropositive mothers recruited from an infectious disease clinic of a large urban medical center. Individual interviews were conducted at baseline and two follow-up points, 8 to 18 months after enrollment. Based on a model of health behavior, we examined psychiatric and psychosocial predictors of adherence to antiretroviral medications and medical appointments over time. Presence of a psychiatric disorder, negative stressful life events, more household members, and parenting stress were significantly associated with both missed pills and missed medical appointments at follow-up. Baseline substance abuse was associated with missed pills at follow-up and lack of disclosure to family members at baseline was associated with missed medical appointments at follow-up. These findings suggest that interventions that integrate mental health, substance abuse and medical care may be important to improving the medical adherence and health of HIV-seropositive women, particularly in multistressed populations with substantial caregiving and other life demands.

Psychosocial challenges and protective influences for socio-emotional coping of HIV+ adolescents in South Africa: a qualitative investigation

Abstract Introduction. While the roll-out of antiretroviral therapy in South Africa should lead to a reduction in mother to child transmission, mortality and orphaning, it will also be accompanied by a large number of children entering adolescence and adulthood with a chronic infectious disease. Adolescence is a particularly vulnerable period for HIV-infected people in relation to mental health problems and engagement in high-risk behaviours, including non-compliance with medical treatment. The goal of this qualitative study was to develop an understanding of the psychosocial challenges as well as protective influences promoting socio-emotional coping in HIV+ adolescents in order to inform mental health promotion and HIV prevention programming for this population in South Africa. Method. In-depth qualitative interviews were conducted with HIV+ adolescents (25) and caregivers of HIV+ children (15) at a large HIV/AIDS Clinic in South Africa. Data were analysed thematically using NVivo8 software. Results. Psycho-social challenges for adolescents included dealing with loss of biological parents in the case of orphans; coming to terms with their HIV+ status including identity difficulties; external stigma and discrimination; and disclosure difficulties. For caregivers, disclosure and lack of financial, family and social support emerged as key challenges. Medication, HIV information, a future orientation and social support was identified as important for coping and general well-being of adolescents, with financial and social support emerging as key for promoting supportive caregiving contexts. Conclusion. While HIV+ adolescents in South Africa experience similar concerns to those in high-income countries, socio-emotional coping may be compromised by increased levels of loss due to the late roll-out of ARVS and challenges to caregiving contexts including poverty, stigma and minimally supported foster care arrangements. There is a need for mental health promotion programmes for adolescents to adopt an ecological approach, strengthening protective influences at the individual, interpersonal, community and policy levels.

Understanding the mental health of youth living with perinatal HIV infection: lessons learned and current challenges

Across the globe, children born with perinatal HIV infection (PHIV) are reaching adolescence and young adulthood in large numbers. The majority of research has focused on biomedical outcomes yet there is increasing awareness that long‐term survivors with PHIV are at high risk for mental health problems, given genetic, biomedical, familial and environmental risk. This article presents a review of the literature on the mental health functioning of perinatally HIV‐infected (PHIV+) adolescents, corresponding risk and protective factors, treatment modalities and critical needs for future interventions and research.

Rates and types of psychiatric disorders in perinatally human immunodeficiency virus-infected youth and seroreverters.

BACKGROUND The purpose of this study was to examine 1) the prevalence of psychiatric and substance use disorders in perinatally HIV-infected (HIV+) adolescents and 2) the association between HIV infection and these mental health outcomes by comparing HIV+ youths to HIV exposed but uninfected youths (HIV-) from similar communities. METHODS Data for this paper come from the baseline interview of a longitudinal study of mental health outcomes in 9-16 year old perinatally HIV-exposed youths (61% HIV+) and their caregivers. Three hundred forty youths and their primary adult caregivers were recruited from four medical centers and participated in separate individual interviews. Youth psychiatric disorder was assessed using the caregiver and youth versions of The Diagnostic Interview Schedule for Children (DISC-IV). RESULTS According to caregiver or youth report, a high percentage of HIV+ and HIV- youths met criteria for a non-substance use psychiatric disorder, with significantly higher rates among the HIV+ youths (61% vs. 49%, OR = 1.59; CI = 1.03,2.47; p < .05). The most prevalent diagnoses in both groups were anxiety disorders (46% for total sample) which included social phobia, separation anxiety, agoraphobia, generalized anxiety disorder, panic disorder, obsessive- compulsive disorder, and specific phobias. One quarter of the sample met criteria for a behavioral disorder (ADHD, conduct disorders, and oppositional defiant disorders), with ADHD being most prevalent. HIV+ youths had significantly higher rates of ADHD (OR = 2.45; CI = 1.20, 4.99, p < .05). Only 7% of youths met criteria for a mood disorder and 4% for a substance abuse disorder. Several caregiver variables (caregiver type and HIV status) were also associated with both child HIV status and mental health outcomes. CONCLUSIONS Our data suggest that HIV+ youths are at high risk for mental health disorders. Further longitudinal research is necessary to understand the etiology, as well as potential protective factors, in order to inform efficacy-based interventions.

Adherence to antiretroviral medications and medical care in HIV-infected adults diagnosed with mental and substance abuse disorders

Abstract This paper examines factors associated with adherence to antiretroviral medications (ARVs) in an HIV-infected population at high risk for non-adherence: individuals living with psychiatric and substance abuse disorders. Data were examined from baseline interviews of a multisite cohort intervention study of 1138 HIV-infected adults with both a psychiatric and substance abuse disorder (based on a structured psychiatric research interview using DSM-IV criteria). The baseline interview documented mental illness and substance use in the past year, mental illness and substance abuse severity, demographics, service utilization in the past three months, general health and HIV-related conditions, self-reported spirituality and self-reported ARV medication use. Among the participants, 62% were prescribed ARVs at baseline (n = 542) and 45% of those on ARVs reported skipping medications in the past three days. Reports of non-adherence were significantly associated with having a detectable viral load (p<.01). The factors associated with non-adherence were current drug and alcohol abuse, increased psychological distress, less attendance at medical appointments, non-adherence to psychiatric medications and lower self-reported spirituality. Increased psychological distress was significantly associated with non-adherence, independent of substance abuse (p<.05). The data suggest that both mental illness and substance use must be addressed in HIV-infected adults living with these co-morbid illnesses to improve adherence to ARVs.

Adherence to antiretroviral treatment among pregnant and postpartum HIV-infected women

Abstract Among women with HIV infection, pregnancy is a time when maintenance of maternal health and reduction of vertical HIV transmission are primary concerns. Few studies have examined adherence to Antiretroviral Treatment (ART) during pregnancy and in the postpartum period when the demands of childcare may significantly interfere with womens self-care behaviors. This study examined ART use and adherence in HIV-infected pregnant and postpartum women participating in the Women and Infants Transmission Study (WITS-IV) in the US. Adherence was assessed through a self-report interview during the third trimester of pregnancy and six-month postpartum. Data were also collected on demographics, biomedical markers and health related symptoms. During the third trimester visit, 77% (309/399) of women completed the self-report adherence measure; 61% (188/309) reported complete adherence. Factors associated with non-adherence included advanced HIV disease status, higher HIV-RNA viral load, more health-related symptoms and alcohol and tobacco use. At six-month postpartum, 55% (220/399) completed the measure; 44% (97/220) of these women reported complete adherence. Factors associated with non-adherence during the postpartum period were ethnicity, more health-related symptoms and WITS clinical site. Results of multivariate analyses using Generalized Estimated Equation analyses across the two visits revealed that more health-related symptoms, higher HIV-RNA viral load, increased alcohol use and clinical site were independently associated with ART non-adherence. These analyses indicate that medication adherence is more likely during pregnancy than postpartum in HIV-infected women, perhaps provoked by motivation to reduce vertical transmission and/or intensive antepartum surveillance. Further investigation is warranted to clarify factors implicated in womens decision-making process regarding ART medication adherence.

Effects of perinatal HIV infection and associated risk factors on cognitive development among young children

OBJECTIVE. We examined the effect of HIV, in combination with other important health and social factors, on the development of cognitive abilities of children perinatally exposed to HIV. METHODS. Serial cognitive assessments were performed for 117 children who were infected vertically and 422 children who were exposed to but not infected with HIV, in a multicenter, natural history, longitudinal study. Repeated-measures analyses were used to evaluate the neurocognitive development of children between the ages of 3 and 7 years, as measured by the McCarthy Scales of Children’s Abilities (MSCA). RESULTS. Children with HIV infection and class C status scored significantly lower in all domains of cognitive development, across all time points, than did those who were HIV infected without an AIDS-defining illness and those who were HIV exposed but not infected. There were no significant differences between the 2 latter groups in General Cognitive Index or specific domain scores. Rates of change in cognitive development were comparable (parallel) among all 3 groups over a period of 4 years. Factors that were associated consistently and significantly with lower mean scores were HIV status, number of times an examination had been completed previously, primary language, maternal education, and gender. No factors were related to rate of change of any mean domain score. CONCLUSIONS. An early AIDS-defining illness increased the risk of chronic static encephalopathy during the preschool and early school age years. Children with HIV infection but no class C event performed as well as noninfected children in measures of general cognitive ability. No significantly different profiles of strengths and weaknesses for verbal, perceptual-performance, quantitative, or memory functioning were observed among children with or without HIV infection. A number of factors were found to have significant effects on the mean scores of children in all 3 groups; however, they were not related to the rate at which learning occurred.

Behavioral Health Risks in Perinatally HIV-Exposed Youth: Co-Occurrence of Sexual and Drug Use Behavior, Mental Health Problems, and Nonadherence to Antiretroviral Treatment

In a sample of perinatally HIV-infected (PHIV+) and perinatally HIV-exposed, uninfected (PHEU) adolescents, we examined the co-occurrence of behavioral health risks including mental health problems, onset of sexual and drug use behaviors, and (in PHIV+ youth) nonadherence to antiretroviral therapy (ART). Participants, recruited from 2007 to 2010, included 349 youth, ages 10-16 years, enrolled in a cohort study examining the impact of HIV infection and ART. Measures of the above behavioral health risks were administered to participants and primary caregivers. Nearly half the participants met study criteria for at least one behavioral health risk, most frequently, mental health problems (28%), with the onset of sexual activity and substance use each reported by an average of 16%. Among the sexually active, 65% of PHIV+ and 50% of PHEU youth reported unprotected sex. For PHIV +youth, 34% reported recent ART nonadherence, of whom 45% had detectable HIV RNA levels. Between 16% (PHIV+) and 11% (PHEU) of youth reported at least two behavioral health risks. Older age, but not HIV status, was associated with having two or more behavioral health risks versus none. Among PHIV+ youth, living with a birth mother (versus other caregivers) and detectable viral load were associated with co-occurrence of behavioral health risks. In conclusion, this study suggests that for both PHIV+ and PHEU youth, there are multiple behavioral health risks, particularly mental health problems, which should be targeted by service systems that can integrate prevention and treatment efforts.