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      Caregiver experience and perceived acceptability of a novel near point-of-care early infant HIV diagnostic test among caregivers enrolled in the PMTCT program, Myanmar: A qualitative study

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          Abstract

          Background

          The majority of HIV infection among children occurs through mother-to-child transmission. HIV exposed infants are recommended to have virological testing at birth or 4–6 weeks of age but challenges with centralized laboratory-based testing in Myanmar result in low testing rates and delays in result communication and treatment initiation. Decentralized point-of-care (POC) testing when integrated in prevention of mother-to-child transmission of HIV (PMTCT) services, can be an alternative to increase coverage of early infant diagnosis (EID) and timely engagement in HIV treatment and care.

          Aim

          This paper aims to explore experiences of caregivers of HIV-exposed infants enrolled in the PMTCT program in Myanmar and the perceived acceptability of point-of-care EID testing compared to conventional centralised laboratory-based testing.

          Methods

          This is a sub-study of the cluster randomised controlled stepped-wedge trial (Trial registration number: ACTRN12616000734460) that assessed the impact of near POC EID testing using Xpert HIV-1 Qual assay in four public hospitals in Myanmar. Caregivers of infants who were enrolled in the intervention phase of the main study, had been tested with both Xpert and standard of care tests and had received the results were eligible for this qualitative study. Semi-structured interviews were conducted with 23 caregivers. Interviews were audio recorded, transcribed verbatim and translated into English. Thematic data analysis was undertaken using NVivo 12 Software (QSR International).

          Results

          The majority of caregivers were satisfied with the quality of care provided by PMTCT services. However, they encountered social and financial access barriers to attend the PMTCT clinic regularly. Mothers had concerns about community stigma from the disclosure of their HIV status and the potential consequences for their infants. While medical care at the PMTCT clinics was free, caregivers sometimes experienced financial difficulties associated with out-of-pocket expenses for childbirth and transportation. Some caregivers had to choose not to attend work (impacting their income) or the adult antiretroviral clinic in order to attend the paediatric PMTCT clinic appointment. The acceptability of the Xpert testing process was high among the caregiver participants and more than half received the Xpert result on the same day as testing. Short turnaround time of the near POC EID testing enabled the caregivers to find out their infants’ HIV status quicker, thereby shortening the stressful waiting time for results.

          Conclusion

          Our study identified important access challenges facing caregivers of HIV exposed infants and high acceptability of near POC EID testing. Improving the retention rate in the PMTCT and EID programs necessitates careful attention of program managers and policy makers to these challenges, and POC EID represents a potential solution.

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          Most cited references24

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          Standards for reporting qualitative research: a synthesis of recommendations.

          Standards for reporting exist for many types of quantitative research, but currently none exist for the broad spectrum of qualitative research. The purpose of the present study was to formulate and define standards for reporting qualitative research while preserving the requisite flexibility to accommodate various paradigms, approaches, and methods.
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            HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action.

            Internationally, there has been a recent resurgence of interest in HIV and AIDS-related stigma and discrimination, triggered at least in part by growing recognition that negative social responses to the epidemic remain pervasive even in seriously affected communities. Yet, rarely are existing notions of stigma and discrimination interrogated for their conceptual adequacy and their usefulness in leading to the design of effective programmes and interventions. Taking as its starting point, the classic formulation of stigma as a 'significantly discrediting' attribute, but moving beyond this to conceptualize stigma and stigmatization as intimately linked to the reproduction of social difference, this paper offers a new framework by which to understand HIV and AIDS-related stigma and its effects. It so doing, it highlights the manner in which stigma feeds upon, strengthens and reproduces existing inequalities of class, race, gender and sexuality. It highlights the limitations of individualistic modes of stigma alleviation and calls instead for new programmatic approaches in which the resistance of stigmatized individuals and communities is utilized as a resource for social change.
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              Barriers and facilitating factors to the uptake of antiretroviral drugs for prevention of mother-to-child transmission of HIV in sub-Saharan Africa: a systematic review

              Objectives To investigate and synthesize reasons for low access, initiation and adherence to antiretroviral drugs by mothers and exposed babies for prevention of mother-to-child transmission (PMTCT) of HIV in sub-Saharan Africa. Methods A systematic literature review was conducted. Four databases were searched (Medline, Embase, Global Health and Web of Science) for studies conducted in sub-Saharan Africa from January 2000 to September 2012. Quantitative and qualitative studies were included that met pre-defined criteria. Antiretroviral (ARV) prophylaxis (maternal/infant) and combination antiretroviral therapy (ART) usage/registration at HIV care and treatment during pregnancy were included as outcomes. Results Of 574 references identified, 40 met the inclusion criteria. Four references were added after searching reference lists of included articles. Twenty studies were quantitative, 16 were qualitative and eight were mixed methods. Forty-one studies were conducted in Southern and East Africa, two in West Africa, none in Central Africa and one was multi-regional. The majority (n=25) were conducted before combination ART for PMTCT was emphasized in 2006. At the individual-level, poor knowledge of HIV/ART/vertical transmission, lower maternal educational level and psychological issues following HIV diagnosis were the key barriers identified. Stigma and fear of status disclosure to partners, family or community members (community-level factors) were the most frequently cited barriers overall and across time. The extent of partner/community support was another major factor impeding or facilitating the uptake of PMTCT ARVs, while cultural traditions including preferences for traditional healers and birth attendants were also common. Key health-systems issues included poor staff-client interactions, staff shortages, service accessibility and non-facility deliveries. Conclusions Long-standing health-systems issues (such as staffing and service accessibility) and community-level factors (particularly stigma, fear of disclosure and lack of partner support) have not changed over time and continue to plague PMTCT programmes more than 10 years after their introduction. The potential of PMTCT programmes to virtually eliminate vertical transmission of HIV will remain elusive unless these barriers are tackled. The prominence of community-level factors in this review points to the importance of community-driven approaches to improve uptake of PMTCT interventions, although packages of solutions addressing barriers at different levels will be important.
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                Author and article information

                Contributors
                Role: Formal analysisRole: Project administrationRole: Writing – review & editing
                Role: MethodologyRole: Writing – review & editing
                Role: Project administrationRole: SupervisionRole: Writing – review & editing
                Role: Project administrationRole: SupervisionRole: Writing – review & editing
                Role: SupervisionRole: Writing – review & editing
                Role: SupervisionRole: Writing – review & editing
                Role: SupervisionRole: Writing – review & editing
                Role: SupervisionRole: Writing – review & editing
                Role: SupervisionRole: Writing – review & editing
                Role: InvestigationRole: MethodologyRole: Writing – review & editing
                Role: MethodologyRole: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: MethodologyRole: SupervisionRole: Writing – review & editing
                Role: MethodologyRole: SupervisionRole: Writing – review & editing
                Role: Editor
                Journal
                PLoS One
                PLoS One
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                30 October 2020
                2020
                : 15
                : 10
                : e0241245
                Affiliations
                [1 ] Burnet Institute, Yangon, Myanmar
                [2 ] Burnet Institute, Melbourne, Australia
                [3 ] School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia
                [4 ] National Health Laboratory, Ministry of Health and Sports, Yangon, Myanmar
                [5 ] The Kirby Institute for Infection and Immunity in Society, UNSW Sydney, Sydney, Australia
                [6 ] Sexual and Reproductive Health Unit, Papua New Guinea Institute of Medical Research, Goroka, Papua New Guinea
                [7 ] Department of Population Health, Aga Khan University, Nairobi, Kenya
                [8 ] Department of Public health and Primary Care, International Centre for Reproductive Health (ICRH), Ghent University, Ghent, Belgium
                1. IRCCS Neuromed 2. Doctors with Africa CUAMM, ITALY
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                ¶ Membership of the AAMI study group is provided in the Acknowledgments.

                Author information
                https://orcid.org/0000-0002-6387-9396
                https://orcid.org/0000-0001-7406-8639
                https://orcid.org/0000-0003-1274-961X
                Article
                PONE-D-20-22119
                10.1371/journal.pone.0241245
                7598472
                33125390
                6f5cf925-a031-448d-9127-b2d988d351c2
                © 2020 Yee et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 20 July 2020
                : 11 October 2020
                Page count
                Figures: 0, Tables: 0, Pages: 16
                Funding
                Funded by: funder-id http://dx.doi.org/10.13039/501100000925, National Health and Medical Research Council;
                Award ID: GNT1063725
                Award Recipient :
                Support was provided by the National Health and Medical Research Council of Australia (NHMRC) through Project grant GNT1063725, and Career Development Fellowship to S Luchters. The fundershad no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                People and Places
                Population Groupings
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                Medicine and Health Sciences
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                Biology and Life Sciences
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                Custom metadata
                As ethics approval (through the Alfred Hospital HREC and in-country ethics committees in Myanmar) was subject to the data being securely stored on a password protected database, with access restricted to authorized members of the research staff, we are unable to deposit the data in a public repository. Also, due to the in-depth nature of the data and the small communities where data collection took place, the data transcripts could contain potentially identifiable quotations - and potentially cause shame or embarrassment, especially in settings where there is stigma associated with HIV/AIDS. Given the ethical restrictions on sharing data publicly, data sharing will be made possible on request via the Alfred Hospital HREC ( research@ 123456alfred.org.au , project number 500/14) and the Department of Medical Research IRB ( ercdmr2015@ 123456gmail.com , approval number Ethics/DMR/2016/115).

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