Browsing by Author "Namukwaya, Stella"

Now showing 1 - 4 of 4
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    Antiretroviral therapy and changing patterns of HIV stigmatization in Entebbe, Uganda
    (John Wiley & Sons Ltd, 2015) Russell, Steve; Zalwango, Flavia; Namukwaya, Stella; Katongole, Joseph; Muhumuza, Richard; Nalugya, Ruth; Seeley, Janet
    Antiretroviral therapy (ART) has the potential to change processes of HIV stigmatization. In this article, changing processes of stigmatization among a group of people living with HIV (PLWH) on ART in Wakiso District, Uganda, are analyzed using qualitative data from a study of PLWH’s self-management of HIV on ART. There were 38 respondents (20 women, 18 men) who had been taking ART for at least 1 year. They were purposefully selected from government and non-government ART providers. Two in depth interviews were held with each participant. Processes of reduced self-stigmatization were clearly evident, caused by the recovery of their physical appearance and support from health workers. However most participants continued to conceal their status because they anticipated stigma; for example, they feared gossip, rejection and their status being used against them. Anticipated stigma was gendered: women expressed greater fear of enacted forms of stigma such as rejection by their partner; in contrast men’s fears focused on gossip, loss of dignity and self-stigmatization. The evidence indicates that ART has not reduced underlying structural drivers of stigmatization, notably gender identities and inequalities, and that interventions are still required to mitigate and tackle stigmatization, such as counselling, peer-led education and support groups that can help PLWH reconstruct alternative and more positive identities. A video abstract of this article can be found at: https://youtu.be/WtIaZJQ3Y_8
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    Finding Meaning: HIV Self-Management and Wellbeing among People Taking Antiretroviral Therapy in Uganda
    (PLoS ONE, 2016) Russell, Steve; Martin, Faith; Zalwango, Flavia; Namukwaya, Stella; Nalugya, Ruth; Muhumuza, Richard; Katongole, Joseph; Seeley, Janet
    The health of people living with HIV (PLWH) and the sustained success of antiretroviral therapy (ART) programmes depends on PLWH’s motivation and ability to self-manage the condition over the long term, including adherence to drugs on a daily basis. PLWH’s selfmanagement of HIV and their wellbeing are likely to be interrelated. Successful self-management sustains wellbeing, and wellbeing is likely to motivate continued self-management. Detailed research is lacking on PLWH’s self-management processes on ART in resourcelimited settings. This paper presents findings from a study of PLWH’s self-management and wellbeing in Wakiso District, Uganda. Thirty-eight PLWH (20 women, 18 men) were purposefully selected at ART facilities run by the government and by The AIDS Support Organisation in and around Entebbe. Two in-depth interviews were completed with each participant over three or four visits. Many were struggling economically, however the recovery of health and hope on ART had enhanced wellbeing and motivated self-management. The majority were managing their condition well across three broad domains of self-management. First, they had mobilised resources, notably through good relationships with health workers. Advice and counselling had helped them to reconceptualise their condition and situation more positively and see hope for the future, motivating their work to self-manage. Many had also developed a new network of support through contacts they had developed at the ART clinic. Second, they had acquired knowledge and skills to manage their health, a useful framework to manage their condition and to live their life. Third, participants were psychologically adjusting to their condition and their new ‘self’: they saw HIV as a normal disease, were coping with stigma and had regained self-esteem, and were finding meaning in life. Our study demonstrates the centrality of social relationships and other nonmedical aspects of wellbeing for self-management which ART programmes might explore further and encourage.
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    The Framing and Fashioning of Therapeutic Citizenship Among People Living With HIV Taking Antiretroviral Therapy in Uganda
    (Sage, 2016) Russell, Steve; Namukwaya, Stella; Zalwango, Flavia; Seeley, Janet
    In this article, we examine how people living with HIV (PLWH) were able to reconceptualize or “reframe” their understanding of HIV and enhance their capacity to self-manage the condition. Two in-depth interviews were held with 38 PLWH (20 women, 18 men) selected from three government and nongovernment antiretroviral therapy (ART) delivery sites in Wakiso District, and the narratives analyzed. ART providers played an important role in shaping participants’ HIV self-management processes. Health workers helped PLWH realize that they could control their condition, provided useful concepts and language for emotional coping, and gave advice about practical selfmanagement tasks, although this could not always be put into practice. ART providers in this setting were spaces for the development of a collective identity and a particular form of therapeutic citizenship that encouraged selfmanagement, including adherence to ART. Positive framing institutions are important for many PLWH in resourcelimited settings and the success of ART programs.
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    Pregnancy in HIV Clinical Trials in Sub Saharan Africa: Failure of Consent or Contraception?
    (PLoS ONE, 2013) Ssali, Agnes; Namukwaya, Stella; Bufumbo, Leonard; Seeley, Janet; Lalloo, David G.; Parkes-Ratanshi, Rosalind; Kamali, Anatoli
    Higher than expected pregnancy rates have been observed in HIV related clinical trials in Sub-Saharan Africa. We designed a qualitative study to explore the factors contributing to high pregnancy rates among participants in two HIV clinical trials in Sub-Saharan Africa. Methods: Female and male participants enrolled in one of two clinical HIV trials in south-west Uganda were approached. The trials were a phase III microbicide efficacy trial among HIV negative women using vaginal gel (MDP); and a trial of primary prevention prophylaxis for invasive cryptococcal disease using fluconazole among HIV infected men and women in Uganda (CRYPTOPRO). 14 focus group discussions and 8 in-depth interviews were conducted with HIV positive and negative women and their male partners over a six month period. Areas explored were their experiences about why and when one should get pregnant, factors affecting use of contraceptives, HIV status disclosure and trial product use. Results: All respondents acknowledged being advised of the importance of avoiding pregnancy during the trial. Factors reported to contribute to pregnancy included; trust that the investigational product (oral capsules/vaginal gel) would not harm the baby, need for children, side effects that led to inconsistent contraceptive use, low acceptance of condom use among male partners. Attitudes towards getting pregnant are fluid within couples over time and the trials often last for more than a year. Researchers need to account for high pregnancy rates in their sample size calculations, and consider lesser used female initiated contraceptive options e.g. diaphragm or female condoms. In long clinical trials where there is a high fetal or maternal risk due to investigational product, researchers and ethics committees should consider a review of participants contraceptive needs/pregnancy desire review after a fixed period, as need for children, partners and health status of participants may alter over time.