Michael L. Scanlon

Disclosure of HIV status to children in resource-limited settings: a systematic review

Informing children of their own HIV status is an important aspect of long‐term disease management, yet there is little evidence of how and when this type of disclosure takes place in resource‐limited settings and its impact.

A Cross-Sectional Study of Disclosure of HIV Status to Children and Adolescents in Western Kenya

Introduction Disclosure of HIV status to children is essential for disease management but is not well characterized in resource-limited settings. This study aimed to describe the prevalence of disclosure and associated factors among a cohort of HIV-infected children and adolescents in Kenya. Methods We conducted a cross-sectional study, randomly sampling HIV-infected children ages 6–14 years attending 4 HIV clinics in western Kenya. Data were collected from questionnaires administered by clinicians to children and their caregivers, supplemented with chart review. Descriptive statistics and disclosure prevalence were calculated. Univariate analyses and multivariate logistic regression were performed to assess the association between disclosure and key child-level demographic, clinical and psychosocial characteristics. Results Among 792 caregiver-child dyads, mean age of the children was 9.7 years (SD = 2.6) and 51% were female. Prevalence of disclosure was 26% and varied significantly by age; while 62% of 14-year-olds knew their status, only 42% of 11-year-olds and 21% of 8-year-olds knew. In multivariate regression, older age (OR 1.49, 95%CI 1.35–1.63), taking antiretroviral drugs (OR 2.27, 95%CI 1.29–3.97), and caregiver-reported depression symptoms (OR 2.63, 95%CI 1.12–6.20) were significantly associated with knowing one’s status. Treatment site was associated with disclosure for children attending one of the rural clinics compared to the urban clinic (OR 3.44, 95%CI 1.75–6.76). Conclusions Few HIV-infected children in Kenya know their HIV status. The likelihood of disclosure is associated with clinical and psychosocial factors. More data are needed on the process of disclosure and its impact on children.

A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya

BackgroundInternational collaborators face challenges in the design and implementation of ethical biomedical research. Evaluating community understanding of research and processes like informed consent may enable researchers to better protect research participants in a particular setting; however, there exist few studies examining community perspectives in health research, particularly in resource-limited settings, or strategies for engaging the community in research processes. Our goal was to inform ethical research practice in a biomedical research setting in western Kenya and similar resource-limited settings.MethodsWe sought to use mabaraza, traditional East African community assemblies, in a qualitative study to understand community perspectives on biomedical research and informed consent within a collaborative, multinational research network in western Kenya. Analyses included manual, progressive coding of transcripts from mabaraza to identify emerging central concepts.ResultsOur findings from two mabaraza with 108 community members revealed that, while participants understood some principles of biomedical research, they emphasized perceived benefits from participation in research over potential risks. Many community members equated health research with HIV testing or care, which may be explained in part by the setting of this particular study. In addition to valuing informed consent as understanding and accepting a role in research activities, participants endorsed an increased role for the community in making decisions about research participation, especially in the case of children, through a process of community consent.ConclusionsOur study suggests that international biomedical research must account for community understanding of research and informed consent, particularly when involving children. Moreover, traditional community forums, such as mabaraza in East Africa, can be used effectively to gather these data and may serve as a forum to further engage communities in community consent and other aspects of research.

Measuring adherence to antiretroviral therapy in children and adolescents in western Kenya

High levels of adherence to antiretroviral therapy (ART) are central to HIV management. The objective of this study was to compare multiple measures of adherence and investigate factors associated with adherence among HIV‐infected children in western Kenya.

'Why did you not tell me?': perspectives of caregivers and children on the social environment surrounding child HIV disclosure in Kenya.

Objective:We sought to better understand how social factors shape HIV disclosure to children from the perspective of caregivers and HIV-infected children in Kenya. Design:We conducted a qualitative study using focus group discussions (FGDs) to gain perspectives of caregivers and children on the social environment for HIV disclosure to children in western Kenya. FGDs were held with caregivers who had disclosed the HIV status to their child and those who had not, and with HIV-infected children who knew their HIV status. Methods:FGD transcripts were translated into English, transcribed, and analyzed using constant comparison, progressive coding, and triangulation to arrive at a contextualized understanding of social factors influencing HIV disclosure. Results:Sixty-one caregivers of HIV-infected children participated in eight FGDs, and 23 HIV-infected children participated in three FGDs. Decisions around disclosure were shaped by a complex social environment that included the caregiver–child dyad, family members, neighbors, friends, schools, churches, and media. Whether social actors demonstrated support or espoused negative beliefs influenced caregiver decisions to disclose. Caregivers reported that HIV-related stigma was prominent across these domains, including stereotypes associating HIV with sexual promiscuity, immorality, and death, which were tied to caregiver fears about disclosure. Children also recognized stigma as a barrier to disclosure, but were less specific about the social and cultural stereotypes cited by the caregivers. Conclusion:In this setting, caregivers and children described multiple actors who influenced disclosure, mostly due to stigmatizing beliefs about HIV. Better understanding the social factors impacting disclosure may improve the design of support services for children and caregivers.

Community Perspectives on Research Consent Involving Vulnerable Children in Western Kenya

Involving vulnerable pediatric populations in international research requires culturally appropriate ethical protections. We sought to use mabaraza, traditional East African community assemblies, to understand how a community in western Kenya viewed participation of children in health research and informed consent and assent processes. Results from 108 participants revealed generally positive attitudes towards involving vulnerable children in research, largely because they assumed children would directly benefit. Consent from parents or guardians was understood as necessary for participation while gaining child assent was not. They felt other caregivers, community leaders, and even community assemblies could participate in the consent process. Community members believed research involving orphans and street children could benefit these vulnerable populations, but would require special processes for consent.

Test positivity for chlamydia, gonorrhea, and syphilis infection among a cohort of individuals released from jail in Marion County, Indiana.

Background Individuals entering jails have high rates of sexually transmitted infections (STI), but there are few data on STI in the postincarceration period. This study aimed to describe rates of chlamydia, gonorrhea, and syphilis infection among individuals released from Marion County (Indianapolis), Indiana jails. Methods We conducted a retrospective cohort study of individuals incarcerated in Marion County, Indiana jails from 2003 to 2008 (n = 118,670). We linked county jail and public health data to identify individuals with positive STI test results in the 1 year after release from jail. Rates per 100,000 individuals and Cox proportional hazard analyses were performed for each STI, stratified by demographic, STI, and jail characteristics. Results We found significantly higher rates of STI in this cohort than in the general population, with rates in the 1 year after release being 2 to 7 times higher for chlamydia, 5 to 24 times higher for gonorrhea, and 19 to 32 times higher for syphilis compared with rates in the general population. Characteristics most associated with increased risk of a positive STI test result among this cohort were younger age for chlamydia and gonorrhea, older age for syphilis, black race for men, being jailed for prostitution for women, history of STI, and history of prior incarceration. Conclusions This study found high rates of STIs among a cohort of individuals recently released from jail and identified a number of risk factors. Further study is needed to improve targeted STI testing and treatment among this high-risk population.

HIV Stigma Perspectives from Kenyan Child Caregivers and Adolescents Living with HIV

Stigma shapes all aspects of HIV prevention and treatment, yet there are limited data on how HIV-infected youth and their families are affected by stigma in sub-Saharan Africa. The authors conducted a qualitative study using focus group discussions among 39 HIV-infected adolescents receiving care at HIV clinics in western Kenya and 53 caregivers of HIV-infected children. Participants felt that while knowledge and access to treatment were increasing, many community members still held negative and inaccurate views about HIV, including associating it with immorality and believing in transmission by casual interactions. Stigma was closely related to a loss of social and economic support but also included internalized negative feelings about oneself. Participants identified treatment-related impacts of stigma, including nonadherence, nondisclosure of status to child or others, and increased mental health problems. Qualitative inquiry also provided insights into how to measure and reduce stigma among affected individuals and families.

Epidemiology of Sexually Transmitted Infections Among Offenders Following Arrest or Incarceration

OBJECTIVES We sought to estimate rates of sexually transmitted infections (STIs) among criminal offenders in the 1 year after arrest or release from incarceration. METHODS We performed a retrospective cohort study of risk of having a positive STI (chlamydia, gonorrhea, or syphilis) or incident-positive HIV test in the 1 year following arrest or incarceration in Marion County (Indianapolis), Indiana. Participants were 247,211 individuals with arrest or incarceration in jail, prison, or juvenile detention between 2003 and 2008. RESULTS Test positivity rates (per 100,000 and per year) were highest for chlamydia (2968) and gonorrhea (2305), and lower for syphilis (278) and HIV (61). Rates of positive STI and HIV were between 1.5 and 2.8 times higher in female than male participants and between 2.7 and 6.9 times higher for Blacks than Whites. Compared with nonoffenders, offenders had a relative risk of 3.9 for chlamydia, 6.6 for gonorrhea, 3.6 for syphilis, and 4.6 for HIV. CONCLUSIONS The 1-year period following arrest or release from incarceration represents a high-impact opportunity to reduce STI and HIV infection rates at a population level.

Tablet-based disclosure counselling for HIV-infected children, adolescents, and their caregivers: a pilot study

Background: Overwhelmed, under-trained medical staff working in resource-limited settings need efficient resources for HIV disclosure counselling. The objective of this study was to describe providers’ experiences using tablet computers for disclosure-related counselling with HIV-infected children and their caregivers in western Kenya, with additional perspectives from adolescents. Methods: A qualitative study design was implemented at three HIV clinics in western Kenya (Bumala, Busia and Port Victoria) within the Academic Model Providing Access to Healthcare (AMPATH) partnership. Twenty-one healthcare providers involved with paediatric disclosure were recruited and enrolled in the study. Initial interviews focused on understanding current disclosure practices and barriers. Tablets containing disclosure-related resources were distributed. Resources included short narrative videos created in this context to highlight issues relevant to child HIV disclosure. Results: Providers reported tablets improved disclosure, child participation, and medication adherence. All reported that reviewing materials increased their knowledge and comfort with disclosure. The most frequently used materials were the narrative videos and an animated video explaining the importance of medication adherence. Time was a major barrier for using the tablet. Clinician self-education persisted at one-year follow-up. Adolescents expressed enjoyment from viewing the tablet resources and had a better understanding of the importance of medication adherence. Conclusions: Tablet computers containing resources for disclosure are an acceptable and potentially effective resource to help providers support families with disclosure. Further work is needed to train the clinical providers in using the resources in a developmentally appropriate manner, and to develop new resources on adolescent-specific and HIV-related topics.