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      Non-disclosure of HIV testing history in population-based surveys: implications for estimating a UNAIDS 90-90-90 target

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          ABSTRACT

          Background: HIV/AIDS programmes and organisations around the world use routinely updated estimates of the UNAIDS 90-90-90 targets to track progress and prioritise further programme implementation. Any bias in these estimates has the potential to mislead organisations on where gaps exist in HIV testing and treatment programmes.

          Objective: To measure the extent of undisclosed HIV testing history and its impact on estimating the proportion of people living with HIV (PLHIV) who know their HIV status (the ‘first 90’ of the UNAIDS 90-90-90 targets).

          Methods: We conducted a retrospective cohort study using population-based HIV serological surveillance conducted between 2010 and 2016 and linked, directly observed HIV testing records in Kisesa, Tanzania. Generalised estimating equations logistic regression models were used to detect associations with non-disclosure of HIV testing history adjusting for demographic, behavioural, and clinical characteristics. We compared estimates of the ‘first 90’ using self-reported survey data only and augmented estimates using information from linked records to quantify the absolute and relative impact of undisclosed HIV testing history.

          Results: Numbers of participants in each of the survey rounds ranged from 7171 to 7981 with an average HIV prevalence of 6.9%. Up to 33% of those who tested HIV-positive and 34% of those who tested HIV-negative did not disclose their HIV testing history. The proportion of PLHIV who reported knowing their status increased from 34% in 2010 to 65% in 2016. Augmented estimates including information from directly observed testing history resulted in an absolute impact of 6.7 percentage points and relative impact of 12.4%.

          Conclusions: In this population, self-reported testing history in population-based HIV serological surveys under-estimated the percentage of HIV positives that are diagnosed by a relative factor of 12%. Research should be employed in other surveillance systems that benefit from linked data to investigate how bias may vary across settings.

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          Most cited references8

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          Stigma of People with HIV/AIDS in Sub-Saharan Africa: A Literature Review

          The aim of this literature review is to elucidate what is known about HIV/AIDS and stigma in Sub-Saharan Africa. Literature about HIV/AIDS and stigma in Sub-Saharan Africa was systematically searched in Pubmed, Medscape, and Psycinfo up to March 31, 2009. No starting date limit was specified. The material was analyzed using Gilmore and Somerville's (1994) four processes of stigmatizing responses: the definition of the problem HIV/AIDS, identification of people living with HIV/AIDS (PLWHA), linking HIV/AIDS to immorality and other negative characteristics, and finally behavioural consequences of stigma (distancing, isolation, discrimination in care). It was found that the cultural construction of HIV/AIDS, based on beliefs about contamination, sexuality, and religion, plays a crucial role and contributes to the strength of distancing reactions and discrimination in society. Stigma prevents the delivery of effective social and medical care (including taking antiretroviral therapy) and also enhances the number of HIV infections. More qualitative studies on HIV/AIDS stigma including stigma in health care institutions in Sub-Saharan Africa are recommended.
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            Stigma, disclosure, coping, and medication adherence among people living with HIV/AIDS in Northern Tanzania.

            This study examines a proposed theoretical model examining the interrelationships between stigma, disclosure, coping, and medication adherence among 158 HIV-infected patients on antiretroviral therapy (ART) in northern Tanzania. Perceived and self-stigma, voluntary and involuntary disclosure, positive and negative coping, and demographics were assessed by trained interviewers, and self-reported adherence was collected during 5 months follow-up. Data were examined using correlation and regression analyses. The analyses showed that perceived stigma is primarily related to involuntary disclosure, whereas self-stigma is related to voluntary disclosure. Religious coping positively relates to acceptance, whereas perceived stigma explains higher levels of denial of HIV status. Lastly, adherence was negatively affected by alcohol use, self-stigma, and denial. We conclude that adherence is predominantly predicted by negative rather than positive coping mechanisms. Therefore, substituting maladaptive coping mechanisms like denial and alcohol use with a more adaptive coping style may be an important strategy to improve long-term ART adherence and well-being of patients. Moreover, this study showed that it is useful to examine both involuntary and voluntary disclosure when studying its relation with stigma.
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              Health & Demographic Surveillance System Profile: The Magu Health and Demographic Surveillance System (Magu HDSS)

              The Magu Health and Demographic Surveillance System (Magu HDSS) is part of Kisesa OpenCohort HIV Study located in a rural area of North-Western Tanzania. Since its establishment in 1994, information on pregnancies, births, marriages, migrations and deaths have been monitored and updated between one and three times a year by trained fieldworkers. Other research activities implemented in the cohort include: sero surveys which have been conducted every 2–3 years to collect socioeconomic data, HIV sero status and health knowledge attitude and behaviour in adults aged 15 years or more living in the area; verbal autopsy (VA) interviews conducted to establish cause of death in all deaths encountered in the area; Llnking data collected at health facilities to community-based data; monitoring voluntary counselling and testing (VCT); and assessing uptake of antiretroviral treatment (ART). In addition, within the community, qualitative studies have been conducted to address issues linked to HIV stigma, the perception of ART access and adherence. In 2014, the population was over 35 000 individuals. Magu HDSS has contributed to Tanzanian estimates of fertility and mortality, and is a member of the INDEPTH network. Demographic data for Magu HDSS are available via the INDEPTH Network’s Sharing and Accessing Repository (iSHARE) and applications to access HDSS data for collaborative analysis are encouraged.
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                Author and article information

                Journal
                Glob Health Action
                Glob Health Action
                ZGHA
                zgha20
                Global Health Action
                Taylor & Francis
                1654-9716
                1654-9880
                2018
                14 December 2018
                : 11
                : 1
                : 1553470
                Affiliations
                [a ] Department of Population Health, London School of Hygiene & Tropical Medicine , London, UK
                [b ] MRC/Wits Rural Public Health and Health Transitions Research Unit (Agincourt), School of Public Health, Faculty of Health Sciences, University of the Witwatersrand , Johannesburg, South Africa
                [c ] The TAZAMA Project, National Institute for Medical Research , Mwanza, Tanzania
                [d ] Department of Infectious Disease Epidemiology, Imperial College London , London, UK
                [e ] Department of Social and Environmental Health Research, London School of Hygiene & Tropical Medicine , London, UK
                Author notes
                CONTACT Christopher T. Rentsch Christopher.Rentsch@ 123456lshtm.ac.uk London School of Hygiene & Tropical Medicine , Keppel Street, WC1E 7HTLondon, UK
                Author information
                http://orcid.org/0000-0002-1408-7907
                http://orcid.org/0000-0002-4941-5739
                http://orcid.org/0000-0001-8970-2081
                Article
                1553470
                10.1080/16549716.2018.1553470
                6300092
                6f5ff618-33f3-41e2-8784-4aeeb024faa9
                © 2018 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 04 October 2018
                : 21 November 2018
                Page count
                Figures: 2, Tables: 2, References: 17, Pages: 10
                Funding
                Funded by: Economic and Social Research Council (ESRC)
                Award ID: +4 PhD Studentship
                Funded by: ALPHA Network
                Award ID: OPP1082114
                Funded by: Global Fund 10.13039/100004417
                Award ID: TNZ-405-GO4-H
                Funded by: HIV Modelling Consortium
                Award ID: OPP1084364
                Funded by: MeSH Consortium
                Award ID: OPP1120138
                This work constitutes PhD research funded by the UK Economic and Social Research Council (ESRC) [+4 PhD Studentship]. The study was supported by the Bill & Melinda Gates Foundation grants to the ALPHA Network [OPP1082114], the MeSH Consortium [OPP1120138], and the HIV Modelling Consortium [OPP1084364]. The Kisesa HDSS is a member of the INDEPTH Network and has received funding from the Global Fund to Fight AIDS, Tuberculosis and Malaria [TNZ-405-GO4-H, TNZ-911-G14-S].
                Categories
                Original Article

                Health & Social care
                hiv,self-disclosure,longitudinal studies,demography,sub-saharan africa
                Health & Social care
                hiv, self-disclosure, longitudinal studies, demography, sub-saharan africa

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