Power to participants: methodological and ethical reflections from a decade of adolescent advisory groups in South Africa.

ABSTRACTWhilst the HIV response has made significant progress in increasing representation of adults affected by HIV, the meaningful inclusion of children and adolescents has lagged. But this may be a pivotal moment of change. We report on a decade of conducting adolescent advisory groups in South Africa, to reflect on youth advisory processes. Data was collected from 2008 to 2018 from adolescent advisors (n = 60) and researchers (n = 25), and included feedback sessions, social media, anonymous "post-boxes" and interviews. Findings include the value of adolescent involvement in multiple stages of research co-creation and engagement in policy processes, the need for a safe environment and supporting adolescents living in extreme vulnerability. We also discuss the reconfiguring of power and personal relationships, and logistical and financial needs of adolescent advisory groups. Findings suggest that adolescent co-creation of research is feasible, even with very vulnerable adolescents, although ethical considerations need to be carefully addressed. Benefits include increased methodological rigour, enhanced adolescent acceptability of research and the recalibration of research dynamics for the empowerment of their target beneficiaries. Future studies could benefit from meaningfully involving adolescents through youth advisory groups.

"What does that mean?": The content validity of the ISPCAN Child Abuse Screening Tool - Child version (ICAST-C) in Romania, South Africa, and the Philippines.

BACKGROUND: The International Society for Prevention of Child Abuse and Neglect (ISPCAN) Child Abuse Screening Tool (Children's Version), known as the ICAST-C Version 3, is used widely to assess violence against children, but there is limited psychometric evidence, especially on content validity. OBJECTIVE: This study aimed to assess the content validity of the ICAST-C with adolescents in Romania, South Africa, and the Philippines. METHODS: A purposive sample of adolescents (N = 53, 51 % female) were recruited from urban areas in Romania, the Eastern Cape Province of South Africa, and Metro Manila, Philippines. Semi-structured one-on-one in-depth cognitive interviews sought adolescent perspectives on the relevance, comprehensibility, and comprehensiveness of the ICAST-C. Data were analysed using template analysis. RESULTS: The ICAST-C was broadly perceived to be relevant and comprehensive in measuring violence against children in all study locations. However, there were issues with the comprehensibility of the measure, described at three levels: interpreting items, undertaking coherent elaborations of relevant behaviors and places, and generating a coherent response to the questions. CONCLUSIONS: Suggestions to revise the ICAST-C include, among others, adding a practice or how-to section on answering the survey, clarifying the intent of questions, especially on neglect and sexual abuse, emphasizing that questions cover all locations, and asking more positive questions. Pilot studies testing the content validity and cultural appropriateness are needed as a matter of practice in large self-report surveys.

'They Say HIV is a Punishment from God or from Ancestors': Cross-Cultural Adaptation and Psychometric Assessment of an HIV Stigma Scale for South African Adolescents Living with HIV (ALHIV-SS).

Sub-Saharan Africa is home to 90 % of the world's adolescents living with HIV (ALHIV). HIV-stigma and the resultant fear of being identified as HIV-positive can compromise the survival of these youth by undermining anti-retroviral treatment initiation and adherence. To date, no HIV-stigma measures have been validated for use with ALHIV in Sub-Saharan Africa. This paper reports on a two-stage study in the Eastern Cape, South Africa. Firstly, we conducted a cross-cultural adaptation of an HIV stigma scale, previously used with US ALHIV. One-on-one semi-structured cognitive interviews were conducted with 9 urban and rural ALHIV. Three main themes emerged: 1) participants spoke about experiences of HIV stigma specific to a Southern African context, such as anticipating stigma from community members due to 'punishment from God or ancestors'; 2) participants' responses uncovered discrepancies between what the items intended to capture and how they understood them and 3) participants' interpretation of wording uncovered redundant items. Items were revised or removed in consultation with participants. Secondly, we psychometrically assessed and validated this adapted ALHIV stigma scale (ALHIV-SS). We used total population sampling in 53 public healthcare facilities with community tracing. 721 ALHIV who were fully aware of their status were identified and interviewed for the psychometric assessment. Confirmatory factor analysis confirmed a 3-factor structure of enacted, anticipated and internalized stigma. The removal of 3 items resulted in a significant improvement in model fit (Chi2(df) = 189.83 (33), p < .001) and the restricted model fitted the data well (RMSEA = .017; CFI/TLI = .985/.980; SRMR = .032). Standardized factor loadings of indicators onto the latent variable were acceptable for all three measures (.41-.96). Concurrent criterion validity confirmed hypothesized relationships. Enacted stigma was associated with higher AIDS symptomatology (r = .146, p < .01) and depression (r = .092, p < .01). Internalized stigma was correlated with higher depression (r = .340, p < .01), higher AIDS symptomatology (r = .228, p < .01) and low social support (r = -.265, p < .01). Anticipated stigma was associated with higher depression (r = .203, p < .01) and lower social support (r = -.142, p < .01). The resulting ALHIV-SS has 10 items capturing all three HIV stigma mechanisms experienced by ALHIV. ALHIV-SS will be valuable for evaluating rates and types of stigma, as well as effectiveness of stigma-reduction interventions among ALHIV in Southern Africa.

Redeeming Lost Mothers: Adolescent Antiretroviral Treatment and the Making of Home in South Africa.

In this article, we explore how adolescent antiretroviral treatment (ART) might be signified to repair sociality in Eastern Cape homes that have been ruptured by HIV/AIDS and maternal loss. The post-apartheid period has exposed these families to new forms of social fragmentation, propelled by the disintegration of wage labor, declining marriage rates, and a rampant HIV/AIDS epidemic. Drawing on eight months of ethnographic fieldwork (August 2013-April 2014), we show that in the homes of some adolescents born with HIV, these present-day domestic ruptures were discursively connected to the past shortcomings of their dead and absent mothers. In some familial narratives lost mothers were accused of disobeying their elders, neglecting their children, and flouting custom; their social transgressions were made manifest in their child's inherited HIV. By signifying adolescent ART-taking as an enactment of the discipline and care purportedly absent in their mothers, these families might also attempt to imbue ART, beyond its biomedical function, as a means of social repair.