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      Why Did I Stop? Barriers and Facilitators to Uptake and Adherence to ART in Option B+ HIV Care in Lilongwe, Malawi

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          Abstract

          Causes for loss-to-follow-up, including early refusals of and stopping antiretroviral therapy (ART), in Malawi’s Option B+ program are poorly understood. This study examines the main barriers and facilitators to uptake and adherence to ART under Option B+. In depth interviews were conducted with HIV-infected women who were pregnant or postpartum in Lilongwe, Malawi (N = 65). Study participants included women who refused ART initiation (N = 10), initiated ART and then stopped (N = 26), and those who initiated ART and remained on treatment (N = 29). The barriers to ART initiation were varied and included concerns about partner support, feeling healthy, and needing time to think. The main reasons for stopping ART included side effects and lack of partner support. A substantial number of women started ART after initially refusing or stopping ART. There were several facilitators for re-starting ART, including encouragement from community health workers, side effects subsiding, decline in health, change in partner, and fear of future sickness. Amongst those who remained on ART, desire to prevent transmission and improve health were the most influential facilitators. Reasons for refusing and stopping ART were varied. ART-related side effects and feeling healthy were common barriers to ART initiation and adherence. Providing consistent pre-ART counseling, early support for patients experiencing side effects, and targeted efforts to bring women who stop treatment back into care may improve long term health outcomes.

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          Most cited references 18

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          Reaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research.

           N Mays,  C Pope (1995)
          Qualitative research methods have a long history in the social sciences and deserve to be an essential component in health and health services research. Qualitative and quantitative approaches to research tend to be portrayed as antithetical; the aim of this series of papers is to show the value of a range of qualitative techniques and how they can complement quantitative research.
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            A Systematic Review of Individual and Contextual Factors Affecting ART Initiation, Adherence, and Retention for HIV-Infected Pregnant and Postpartum Women

            Background Despite progress reducing maternal mortality, HIV-related maternal deaths remain high, accounting, for example, for up to 24 percent of all pregnancy-related deaths in sub-Saharan Africa. Antiretroviral therapy (ART) is effective in improving outcomes among HIV-infected pregnant and postpartum women, yet rates of initiation, adherence, and retention remain low. This systematic literature review synthesized evidence about individual and contextual factors affecting ART use among HIV-infected pregnant and postpartum women. Methods Searches were conducted for studies addressing the population (HIV-infected pregnant and postpartum women), intervention (ART), and outcomes of interest (initiation, adherence, and retention). Quantitative and qualitative studies published in English since January 2008 were included. Individual and contextual enablers and barriers to ART use were extracted and organized thematically within a framework of individual, interpersonal, community, and structural categories. Results Thirty-four studies were included in the review. Individual-level factors included both those within and outside a woman’s awareness and control (e.g., commitment to child’s health or age). Individual-level barriers included poor understanding of HIV, ART, and prevention of mother-to-child transmission, and difficulty managing practical demands of ART. At an interpersonal level, disclosure to a spouse and spousal involvement in treatment were associated with improved initiation, adherence, and retention. Fear of negative consequences was a barrier to disclosure. At a community level, stigma was a major barrier. Key structural barriers and enablers were related to health system use and engagement, including access to services and health worker attitudes. Conclusions To be successful, programs seeking to expand access to and continued use of ART by integrating maternal health and HIV services must identify and address the relevant barriers and enablers in their own context that are described in this review. Further research on this population, including those who drop out of or never access health services, is needed to inform effective implementation.
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              Barriers to accessing highly active antiretroviral therapy by HIV-positive women attending an antenatal clinic in a regional hospital in western Uganda

              Background The aim of this study was to describe barriers to accessing and accepting highly active antiretroviral therapy (HAART) by HIV-positive mothers in the Ugandan Kabarole District's Programme for the Prevention of Mother to Child Transmission-Plus (PMTCT-Plus). Methods Our study was a qualitative descriptive exploratory study using thematic analysis. Individual in-depth interviews (n = 45) were conducted with randomly selected HIV-positive mothers who attended this programme, and who: (a) never enrolled in HAART (n = 17); (b) enrolled but did not come back to receive HAART (n = 2); (c) defaulted/interrupted HAART (n = 14); and (d) are currently adhering to HAART (n = 12). A focus group was also conducted to verify the results from the interviews. Results Results indicated that economic concerns, particularly transport costs from residences to the clinics, represented the greatest barrier to accessing treatment. In addition, HIV-related stigma and non-disclosure of HIV status to clients' sexual partners, long waiting times at the clinic and suboptimal provider-patient interactions at the hospital emerged as significant barriers. Conclusions These barriers to antiretroviral treatment of pregnant and post-natal women need to be addressed in order to improve HAART uptake and adherence for this group of the population. This would improve their survival and, at the same time, drastically reduce HIV transmission from mother to child.
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                Author and article information

                Contributors
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                22 February 2016
                2016
                : 11
                : 2
                Affiliations
                [1 ]Baylor College of Medicine Department of Pediatrics, Section of Global Health and Retrovirology, Texas Children’s Hospital, Houston, Texas, United States of America
                [2 ]Baylor College of Medicine—Abbott Fund Children's Clinical Centre of Excellence, Lilongwe, Malawi
                [3 ]Department of Sociology, University of California Los Angeles, Los Angeles, California, United States of America
                [4 ]Health Promotion and Behavioral Sciences, The University of Texas School of Public Health, Houston, Texas, United States of America
                [5 ]HIV Unit, Malawi Ministry of Health, Lilongwe, Malawi
                [6 ]ICAP, Mailman School of Public Health and College of Physicians & Surgeons, Columbia University, New York, New York, United States of America
                London School of Hygiene and Tropical Medicine, UNITED KINGDOM
                Author notes

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

                Conceived and designed the experiments: MHK AZ CM EA. Performed the experiments: MHK AZ AM KS. Analyzed the data: MHK AZ AM. Wrote the paper: MHK AZ AM EA. Critically reviewed the manuscript: EA SA GZ PNK CM.

                Article
                PONE-D-15-48907
                10.1371/journal.pone.0149527
                4762691
                26901563
                acc9308c-e61a-458b-b382-b351e2856098
                © 2016 Kim 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.

                Page count
                Figures: 2, Tables: 1, Pages: 16
                Product
                Funding
                This study was made possible by the Tingathe program supported by United States Agency for International Development (USAID) cooperative agreement number 674-A-00-10-00093-00. MHK was supported by the Fogarty International Center of the National Institutes of Health (NIH) under award number K01 TW009644.
                Categories
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                Antiretroviral Therapy
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                All relevant data are within the paper. For the purpose of protecting potential personally-identifying information, BCM-CFM will make study data available upon request. Individuals interested in accessing the data should contact the corresponding author at mhkim@ 123456bcm.edu .

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