Disclosing the diagnosis of human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS) to a child is a controversial and emotionally charged issue amongst 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. The paper 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 non-disclosure, 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.

This study highlights a need to increase access to hormonal contraceptives and early STI screening/treatment among blacks, improve HIV testing among whites, and increase condom use promotion for all students.

Recommendations suggest that older children and adolescents perinatally infected with HIV (PHIVþ) be informed of their HIV diagnosis; however, delayed disclosure is commonly reported. This study examined the prevalence and timing of HIV disclosure to PHIVþ adolescents and the associations between the timing of disclosure and psychological functioning and other behavioral outcomes. Recruitment took place at four medical centers in New York City between December 2003 and December 2008. This sample included data from 196 PHIVþ youth and their caregivers: 50% of youth were male, 58% African American, 42% Hispanic, with a mean age of 12.71 years. According to caregiver reports, 70% of the PHIVþ youth knew their HIV diagnosis. Youths who had been told were more likely to be older; youths with a Spanish-speaking Latino caregiver and whose caregivers had a grade school education were told at an older age. Youths who had been told their HIV status were significantly less anxious than those who had not been told; there were no other differences in psychological functioning. Youths who knew their status for longer reported higher intentions to self-disclose to potential sex partners. In multivariate analyses only demographic differences associated with timing of disclosure remained. In summary, PHIVþ youth who had been told their HIV status did not show an increase of psychological problems and were more likely to have intentions to self-disclose to sexual partners. Yet, almost one third was entering puberty without important information regarding their illness. Caregivers need support to address factors impeding HIV disclosure.

The novel coronavirus has upended many traditional research procedures as universities and other research entities have closed to activate social distancing. Some social and behavioral research activities (e.g. data analysis, manuscript preparation) can be continued from other environments with appropriate security protocols in place. For studies involving in-person interactions, continuity may be more difficult. Phone-based interactions provide a low-tech solution that may suffice in some cases. Yet, videoconferencing platforms can nearly replicate in-person interactions, activating both auditory and visual senses and potentially resulting in more substantial engagement. Staff can meet with participants individually or in groups, each seeing and hearing one another in real time. This paper provides guidance for researchers transitioning in-person assessments and interventions to a synchronous videoconferencing platform. Best practices, key considerations, examples from the field, and sample protocols are presented to ease transition for ongoing studies and maximize the potential of videoconferencing-and social distancing.

This study examines the relationship between adherence to pediatric HIV regimens and three family experience factors: (1) regimen responsibility; (2) barriers to adherence; and (3) strategies for remembering to give medications. Caregivers of 127 children ages 2-15 years in the PACTS-HOPE multisite study were interviewed. Seventy-six percent of caregivers reported that their children were adherent (taking Ն 90% of prescribed doses within the prior 6 months). Most caregivers reported taking primary responsibility for medication-related activities (72%-95% across activities); caregivers with primary responsibility for calling to obtain refills (95%) were more likely to have adherent children. More than half of caregivers reported experiencing one or more adherence barriers (59%). Caregivers who reported more barriers were also more likely to report having non-adherent children. Individual barriers associated with nonadherence included forgetting, changes in routine, being too busy, and child refusal. Most reported using one or more memory strategies (86%). Strategy use was not associated with adherence. Using more strategies was associated with a greater likelihood of reporting that forgetting was a barrier. For some families with adherence-related organizational or motivational difficulties, using numerous memory strategies may be insufficient for mastering adherence. More intensive interventions, such as home-based nurse-administered dosing, may be necessary. 637

This paper presents findings of a multi-site study designed to document: (1) caregivers' regimen knowledge; (2) barriers to adherence; and (3) the relationships between adherence, regimen knowledge and barriers. Fifty-one predominantly female, African American parents and caregivers of HIV-infected children completed the Treatment Interview Protocol (TIP), a brief, structured interview designed to assess regimen knowledge and barriers to adherence. TIP data were compared to information obtained from medical records and pharmacy refill histories. Forty-nine per cent of children were considered adherent, defined as > or = 90% refill rate, which was significantly associated with virologic response. Significant regimen knowledge deficits were observed among caregivers, and inaccurate identification of prescribed medications was significantly associated with adherence. Caregivers identified 21 barriers to adherence, and poor adherence was significantly related to the number of barriers reported. Results indicate that the TIP is a successful tool for identifying regimen knowledge, potential adherence barriers and adherence problems. Results suggest that the TIP could be integrated into clinical practice as a quick, effective tool to identify poor adherers and guide interventions and treatment decision making.

Computer-assisted interview methods are increasingly popular in the assessment of sensitive behaviors (e.g., substance abuse and sexual behaviors). It has been suggested that the effect of social desirability is diminished when answering via computer, as compared to an interviewer-administered face-to-face (FTF) interview, although studies exploring this hypothesis among adolescents are rare and yield inconsistent findings. This study compared two interview modes among a sample of urban, ethnic-minority, perinatally HIV-exposed U.S. youth (baseline = 148 HIV+, 126 HIV−, ages 9–16 years; follow-up = 120 HIV+, 110 HIV−, ages 10–19 years). Participants were randomly assigned to receive a sexual behavior interview via either Audio Computer-Assisted Self-Interview (ACASI) or FTF interview. The prevalence of several sexual behaviors and participants’ reactions to the interviews were compared. Although higher rates of sexual behaviors were typically reported in the ACASI condition, the differences rarely reached statistical significance, even when limited to demographic subgroups—except for gender. Boys were significantly more likely to report several sexual behaviors in the ACASI condition compared to FTF, whereas among girls no significant differences were found between the two conditions. ACASI-assigned youth rated the interview process as easier and more enjoyable than did FTF-assigned youth, and this was fairly consistent across subgroup analyses as well. We conclude that these more positive reactions to the ACASI interview give that methodology a slight advantage, and boys may disclose more sexual behavior when using computer-assisted interviews.

Although parents and caregivers may have primary responsibility for their children's medication- taking, surprisingly few studies have examined caregiver psychosocial correlates of children's adherence to antiretroviral therapy (ART). This cross-sectional, descriptive study examined the relationship between caregiver psychosocial characteristics and medication adherence among children with HIV. Fifty-four caregivers of children with HIV completed a demographic questionnaire, the Parenting Stress Index, the Brief Symptom Inventory, the Family Support Scale, and the Support Functions Scale. Adherence to ART was measured with children's 6-month pharmacy refill histories. Children and caregivers were primarily African American, urban, and poor (63% reported <$15,000 annual household income). Univariate analyses showed that an adherent classification (>/= 80% refill rate) was associated with shorter duration of highly active antiretroviral therapy (HAART) treatment, nondisclosure of the HIV diagnosis to the child, lower caregiver income level, having a nonbiologically related caregiver, and less caregiver psychiatric distress. In a multivariate logistic regression, duration of child's HAART treatment, child HIV disclosure status, caregiver income, and caregiver psychiatric distress accounted for 63% of the variance in adherence. Findings highlight the complexity of children's adherence to ART and the need for multicenter studies with greater sample sizes to explore in more detail the effects of caregiver psychological distress and child HIV disclosure status on adherence as well as the ways in which regimen fatigue and adherence fluctuate over time.