NRU :: Browsing by Author "Seeley, Janet"

Browsing by Author "Seeley, Janet"

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ABC for people with HIV: responses to sexual behaviour recommendations among people receiving antiretroviral therapy in Jinja, Uganda
(Taylor & Francis, 2011) Allen, Caroline; Mbonye, Martin; Seeley, Janet; Birungi, Josephine; Wolff, Brent; Coutinh, Alex; Jaffar, Shabbar
People living with HIV who are taking antiretroviral therapy (ART) are increasingly involved in ‘positive prevention’ initiatives. These are generally oriented to promoting abstinence, ‘being faithful’ (partner reduction) and condom use (ABC). We conducted a longitudinal qualitative study with people living with HIV using ART, who were provided with adherence education and counselling support by a Ugandan non- governmental organisation, The AIDS Support Organisation (TASO). Forty people were selected sequentially as they started ART, stratified by sex, ART delivery mode (clinic- or home-based) and HIV progression stage (early or advanced) and interviewed at enrolment and at 3, 6, 18 and 30 months. At initiation of ART, participants agreed to follow TASO’s positive-living recommendations. Initially poor health prevented sexual activity. As health improved, participants prioritised resuming economic production and support for their children. With further improvements, sexual desire resurfaced and people in relationships cemented these via sex. The findings highlight the limitations of HIV prevention based on medical care/personal counselling. As ART leads to health improvements, social norms, economic needs and sexual desires increasingly influence sexual behaviour. Positive prevention interventions need to seek to modify normative and economi
Acceptability and Predictors of Uptake of Anti-Retroviral Pre-Exposure Prophylaxis (Prep) among Fishing Communities in Uganda: A Cross-Sectional Discrete Choice Experiment Survey
(AIDS and behavior, 2019) Kuteesa, Monica O.; Quaife, Mathew; Biraro, Sam; Katumba, Kenneth R.; Seeley, Janet; Kamali, Anatoli; Nakanjako, Damalie
We used a discrete choice experiment to assess the acceptability and potential uptake of HIV pre-exposure prophylaxis (PrEP) among 713 HIV-negative members of fishing communities in Uganda. Participants were asked to choose between oral pill, injection, implant, condoms, vaginal ring (women), and men circumcision. Product attributes were HIV prevention effectiveness, sexually transmitted infection (STI) prevention, contraception, waiting time, and secrecy of use. Data were analysed using mixed multinomial logit and latent class models. HIV prevention effectiveness was viewed as the most important attribute. Both genders preferred oral PrEP. Women least preferred the vaginal ring and men the implant. Condom use was predicted to decrease by one third among men, and not to change amongst women. Oral PrEP and other new prevention technologies are acceptable among fishing communities and may have substantial demand. Future work should explore utility of multiple product technologies that combine contraception with HIV and other STI prevention.
Adherence to Antiretroviral Therapy in Jinja, Uganda: A Six-Year Follow-Up Study
(PLoS ONE, 2013) Mbonye, Martin; Seeley, Janet; Ssembajja, Fatuma; Birungi, Josephine; Jaffar, Shabbar
Introduction: We report on the adherence experience of a group of people living with HIV on ART over six years in Uganda. Methods: Between 2005 and 2009, we followed up 41 participants who were also part of a clinical trial comparing home and facility based delivery of ART in Jinja, eastern Uganda. We conducted qualitative in-depth interviews at enrolment, 3, 6, 18 and 30 months to capture experiences with adherence over time. In 2011 we returned to these participants to find out how they were fairing with long term adherence. We managed to retrace 24 participants and interviewed them about their experience. We thematically analysed the data and compared findings over time. Results: Initially there were few barriers to adherence and many followed the adherence guidance closely. By year six, relaxation of these rules was noticeable although self-reported adherence continued to be high. Alcohol consumption was more common than before. Some relatives of the participants who had died claimed that some deaths were a result of alcohol. While participants reported that ART had allowed them to reclaim independence and return to work the changes in work and social routines created new challenges for adherence. Side effects like lipodystrophy were not only causing some stigma but for some tested their faith in the drugs. Many participants reported resumption of sexual lives but apart from those who selected same status partners, disclosure to new partners was minimal. Conclusion: Good adherence practice to ART wanes over the long-term, and people who may have disclosed at initiation find it difficult to do so to new partners once they are healthy. Further adherence interventions and support with disclosure over the course of therapy may need to be considered. (Words: 283)
Adverse Pregnancy Outcomes in Rural Uganda (1996–2013): Trends and Associated Factors from Serial Cross Sectional Surveys
(BMC pregnancy and childbirth, 2015) Asiki, Gershim; Baisley, Kathy; Newton, Rob; Marion, Lena; Seeley, Janet; Kamali, Anatoli; Smedman, Lars
Community based evidence on pregnancy outcomes in rural Africa is lacking yet it is needed to guide maternal and child health interventions. We estimated and compared adverse pregnancy outcomes and associated factors in rural south-western Uganda using two survey methods.Within a general population cohort, between 1996 and 2013, women aged 15–49 years were interviewed on their pregnancy outcome in the past 12 months (method 1). During 2012–13, women in the same cohort were interviewed on their lifetime experience of pregnancy outcomes (method 2). Adverse pregnancy outcome was defined as abortions or stillbirths. We used random effects logistic regression for method 1 and negative binomial regression with robust clustered standard errors for method 2 to explore factors associated with adverse outcome.One third of women reported an adverse pregnancy outcome; 10.8 % (abortion = 8.4 %, stillbirth = 2.4 %) by method 1 and 8.5 % (abortion = 7.2 %, stillbirth = 1.3 %) by method 2. Abortion rates were similar (10.8 vs 10.5) per 1000 women and stillbirth rates differed (26.2 vs 13.8) per 1000 births by methods 1 and 2 respectively. Abortion risk increased with age of mother, non-attendance of antenatal care and proximity to the road. Lifetime stillbirth risk increased with age. Abortion and stillbirth risk reduced with increasing parity.Both methods had a high level of agreement in estimating abortion rate but were markedly below national estimates. Stillbirth rate estimated by method 1 was double that estimated by method 2 but method 1 estimate was more consistent with the national estimates.Strategies to improve prospective community level data collection to reduce reporting biases are needed to guide maternal health interventions.
Alcohol consumption and high risk sexual behavior among female sex workers in Uganda
(African Journal of AIDS Research, 2014) Mbonye, Martin; Rutakumwa, Rwamahe; Weiss, Helen; Seeley, Janet
sex workers. We explored the drivers of alcohol consumption and its relationship to high risk sexual behaviour. Participants were drawn from a cohort of 1 027 women selected from ‘hot spots’ in the suburbs of Kampala city. We conducted 3 in-depth interviews with 40 female sex workers between 2010 and 2011. Data were analysed thematically, focusing on alcohol use within the context of sex work. Alcohol consumption was very high with only seven women reporting that they did not drink. Alcohol consumption was driven by the emotional and economic needs of the participants, but also promoted by clients who encouraged consumption. Many sex workers only started drinking alcohol when they joined sex work on the advice of more experienced peers, as a way to cope with the job. Alcohol was blamed for unsafe sex, acts of violence and poor decision making which increased sexual and physical violence. Alcohol was reported to affect medication adherence for HIV-positive women who forgot to take medicine. The findings suggest that the drivers of alcohol consumption are multifaceted in this group and require both individual and structural interventions. Alcohol reduction counselling can be supportive at the individual level and should be an integral part of HIV prevention programmes for female sex workers and others such as patrons in bars. The counselling should be addressed in a sensitive manner to bar owners and managers.
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
Application of sero- epidemiology data to inform interventions for HBV in Africa: should diagnosis and treatment replace catch-up vaccination?
(Global Health, 2018) McNaughton, Anna L.; Lourenço, José; Armand Bester, Phillip; Mokaya, Jolynne; Lumley, Sheila F.; Forde, Donall; Maponga, Tongai G.; Katumba, Kenneth R.; Goedhals, Dominique; Gupta, Sunetra; Seeley, Janet; Newton, Robert; Ocama, Ponsiano; Matthews, Philippa C.
International goals for hepatitis B virus (HBV) infection set ambitious targets for elimination by 2030. In populations with a high prevalence of infection, catch-up HBV vaccination of adults is sometimes deployed. An alternative approach of ‘test and treat’ could be applied as a population intervention for HBV. Methods: We used a systematic approach to determine the relationship between prevalence of HBV infection (HBsAg) and exposure (anti-HBc) in Africa. We applied a mathematical model to compare the impact of catch-up vaccination with a ‘test and treat’ strategy in a high prevalence setting. Findings: There is a strong relationship between the prevalence of HBsAg and anti- HBc (p<0·0001) across Africa, but the pattern differs between regions. Our data can be interactively visualised at https://hbv-geo.shinyapps.io/oxafricahbv/. In settings with high prevalence of infection, catch-up vaccination may have a transient effect. However, this intervention does not contribute to a sustained decline in prevalence, because a high proportion of adults are either already infected or immune as a result of prior exposure. In contrast, diagnosing and treating infection has a marked impact on reducing prevalence, equivalent to that of neonatal vaccination. Interpretation: We have developed a high-resolution picture of HBV epidemiology across Africa. In combination with robust neonatal vaccination programmes, testing and treating infection is likely to be of more benefit than catch-up vaccination. This alternative not only benefits the infected individual, but also has impact on transmission, thus contributing to sustained reductions in population prevalence.
Assessing acceptability of pre-exposure prophylaxis (PrEP) among participants in an HIV vaccine preparedness study in southwestern Uganda
(PLoS ONE, 2022) Nakamanya, Sarah; Kawuma, Rachel; Kibuuka, Denis; Kusemererwa, Sylvia; McCormack, Sheena; Ruzagira, Eugene; Seeley, Janet
Daily oral pre-exposure prophylaxis (PrEP) use is highly effective against HIV infection. However, the uptake of PrEP among individuals at high-risk of HIV acquisition in sub-Saharan Africa varies because of availability and acceptability. We assessed the acceptability of PrEP among participants in a prospective HIV vaccine preparedness study in Masaka, southwestern Uganda. Methods From November 2018 to August 2019, 20 participants (10 female) were purposively selected for in-depth interviews (IDIs) at 3 and 9 months’ post-enrolment in the vaccine preparedness study. Four focus group discussions (FGD) (two among men) were conducted with 29 individuals categorized as: younger (18–24 years) men, younger (18–24 years) women, older (�30 years) men, and older (�30 years) women. Apart from IDI specific questions on recent life history including work experience, relationship history and places lived, topics for IDIs and FGDs included knowledge of HIV, perceptions of HIV risk (including own risk), knowledge of and use of PrEP. The Theoretical Framework of Acceptability was used to structure a thematic framework approach for data analysis. Results Participants understood that PrEP was an oral pill taken daily by HIV negative individuals to prevent acquisition of HIV. Overall, interest in and acceptability of PrEP was high, more than half expressed positivity towards PrEP but were not ready to initiate taking it citing the burden of daily oral pill taking, related side effects, stigma and distrust of PrEP. Fourteen participants (from IDI and FGD) initiated PrEP, although some (one FGD and two IDI participants) stopped taking it due to side effects or perceived reduced risk. Conclusion We observed a keen interest in PrEP initiation among our study participants. However, a limited understanding of PrEP and associated concerns impeded uptake and sustained use. Hence, interventions are needed to address end-user challenges to increase uptake and support adherence
Cancer research across Africa: a comparative bibliometric analysis
(BMJ Global Health, 2022) Mutebi, Miriam; Lewison, Grant; Aggarwal, Ajay; Alatise, Olusegun Isaac; Booth, Christopher; Cira, Miska; Grover, Surbhi; Ginsburg, Ophira; Gralow, Julie; Gueye, Serine; Kithaka, Benda; Kingham, T. Peter; Kochbati, Lofti; Moodley, Jennifer; Ibrahim Mohammed, Sulma; Mutombo, Alex; Ndlovu, Ntokozo; Ntizimira, Christian; Preer Parham, Groesbeck; Walter, Fiona; Parkes, Jeannette; Shamely, Delva; Hammad, Nazik; Seeley, Janet; Torode, Julie; Sullivan, Richard; Vanderpuye, Verna
Research is a critical pillar in national cancer control planning. However, there is a dearth of evidence for countries to implement affordable strategies. The WHO and various Commissions have recommended developing stakeholder-based needs assessments based on objective data to generate evidence to inform national and regional prioritisation of cancer research needs and goals. Methodology Bibliometric algorithms (macros) were developed and validated to assess cancer research outputs of all 54 African countries over a 12-year period (2009– 2020). Subanalysis included collaboration patterns, site and domain-specific focus of research and understanding authorship dynamics by both position and sex. Detailed subanalysis was performed to understand multiple impact metrics and context relative outputs in comparison with the disease burden as well as the application of a funding thesaurus to determine funding resources. Results African countries in total published 23 679 cancer research papers over the 12-year period (2009–2020) with the fractional African contribution totalling 16 201 papers and the remaining 7478 from authors from out with the continent. The total number of papers increased rapidly with time, with an annual growth rate of 15%. The 49 sub-Saharan African (SSA) countries together published just 5281 papers, of which South Africa’s contribution was 2206 (42% of the SSA total, 14% of all Africa) and Nigeria’s contribution was 997 (19% of the SSA total, 4% of all Africa). Cancer research accounted for 7.9% of all African biomedical research outputs (African research in infectious diseases was 5.1 times than that of cancer research). Research outputs that are proportionally low relative to their burden across Africa are paediatric, cervical, oesophageal and prostate cancer. African research mirrored that of Western countries in terms of its focus on discovery science and pharmaceutical research. The percentages of female researchers in Africa were comparable with those elsewhere, but only in North African and some Anglophone countries. Conclusions There is an imbalance in relevant local research generation on the continent and cancer control efforts. The recommendations articulated in our five-point plan arising from these data are broadly focused on structural changes, for example, overt inclusion of research into national cancer control planning and financial, for example, for countries to spend 10% of a notional 1% gross domestic expenditure on research and development on cancer.
Career development for infection and immunity research in Uganda: a decade of experience from the Makerere University – Uganda Virus Research Institute research and training programme [version 2; peer review: 2 approved]
(AAS Open Research, 2020) Nakanjako, Damalie; Zalwango, Flavia; Wairagala, Pamela; Luboga, Fiona; Andia Biraro, Irene; Bukirwa, Victoria Diana; Mboowa, Mary Gorrethy; Cose, Steve; Seeley, Janet; Elliott, Alison
The Makerere University/Uganda Virus Research Institute (UVRI) Centre of Excellence for Infection & Immunity Research and Training (MUII) is a collaborative programme supporting excellence in Infection and Immunity (I&I) research in Uganda. Set up in 2008, MUII aims to produce internationally competitive Ugandan and East African I&I research leaders, and develop human and infrastructural resources to support research and training excellence. We undertook an internal evaluation of MUII’s achievements, challenges and lessons learned between 08-2008 and 12-2019, to inform programmes seeking to build Africa’s health research expertise. Methods: Quantitative data were abstracted from programme annual reports. Qualitative data were obtained in 03-04/2019: a crosssectional evaluation was undertaken among a purposefully selected representative sample of 27 trainees and two programme staff. Qualitative data was analysed according to pre-determined themes of achievements, challenges, lessons learned and recommendations for improvement. Results: By 12-2019, MUII had supported 68 fellowships at master’s- level and above (50% female: 23 Masters, 27 PhD, 15 post-doctoral, three group-leaders) and over 1,000 internships. Fellows reported career advancement, mentorship by experts, and improved research skills and outputs. Fellows have published over 300 papers, secured grants worth over £20m, established over 40 international collaborations, and taken on research and academic leadership positions in the country. Key lessons were: i) Efficient administration provides a conducive environment for high quality research; ii) Institutions need supportive policies for procurement, including provisions for purchases of specific biological research reagents from international manufacturers; iii) Strong international and multidisciplinary collaboration provides a critical mass of expertise to mentor researchers in development; and iv) Mentorship catalyses young scientists to progress from graduate trainees to productive academic researchers, relevant to society’s most pressing health challenges. Conclusions: Sustainable academic productivity can be achieved through efficient operational support, global collaboration and mentorship to provide solutions to Africa’s health challenges.
Changes in sexual desires and behaviours of people living with HIV after initiation of ART: Implications for HIV prevention and health promotion
(BMC Public Health, 2011) Wamoyi, Joyce; Mbonye, Martin; Seeley, Janet; Birungi, Josephine; Jaffar, Shabbar
Abstract Background: As immune compromised HIV sero-positive people regain health after initiating antiretroviral treatment (ART), they may seek a return to an active ‘normal’ life, including sexual activity. The aim of the paper is to explore the changing sexual desires and behaviour of people on ART in Uganda over a 30 month period. Methods: This study employed longitudinal qualitative interviews with forty people starting ART. The participants received their ART, adherence education and counselling support from The AIDS Support Organisation (TASO). The participants were selected sequentially as they started ART, stratified by sex, ART delivery mode (clinic or home- based) and HIV progression stage (early or advanced) and interviewed at enrolment, 3, 6, 18 and 30 months of their ART use. Results: Sexual desire changed over time with many reporting diminished desire at 3 and 6 months on ART compared to 18 and 30 months of use. The reasons for remaining abstinent included fear of superinfection or infecting others, fear that engaging in sex would awaken the virus and weaken them and a desire to adhere to the counsellors’ health advice to remain abstinent. The motivations for resumption of sexual activity were: for companionship, to obtain material support, social norms around marriage, desire to bear children as well as to satisfy sexual desires. The challenges for most of the participants were using condoms consistently and finding a suitable sexual partner (preferably someone with a similar HIV serostatus) who could agree to have a sexual relationship with them and provide for their material needs. Conclusions: These findings point to the importance of tailoring counselling messages to the changing realities of the ART users’ cultural expectations around child bearing, marriage and sexual desire. People taking ART require support so they feel comfortable to disclose their HIV status to sexual partners.
Community engagement strategies for genomic studies in Africa: a review of the literature
(BMC medical ethics, 2015) Tindana, Paulina; de Vries, Jantina; Campbell, Megan; Littler, Katherine; Seeley, Janet; Marshall, Patricia; Troyer, Jennifer; Ogundipe, Morisola; Alibu, Vincent P.; Yakubu, Aminu; Parker, Michael
Community engagement has been recognised as an important aspect of the ethical conduct of biomedical research, especially when research is focused on ethnically or culturally distinct populations. While this is a generally accepted tenet of biomedical research, it is unclear what components are necessary for effective community engagement, particularly in the context of genomic research in Africa. Methods: We conducted a review of the published literature to identify the community engagement strategies that can support the successful implementation of genomic studies in Africa. Our search strategy involved using online databases, Pubmed (National Library of Medicine), Medline and Google scholar. Search terms included a combination of the following: community engagement, community advisory boards, community consultation, community participation, effectiveness, genetic and genomic research, Africa, developing countries. Results: A total of 44 articles and 1 thesis were retrieved of which 38 met the selection criteria. Of these, 21 were primary studies on community engagement, while the rest were secondary reports on community engagement efforts in biomedical research studies. 34 related to biomedical research generally, while 4 were specific to genetic and genomic research in Africa. Conclusion: We concluded that there were several community engagement strategies that could support genomic studies in Africa. While many of the strategies could support the early stages of a research project such as the recruitment of research participants, further research is needed to identify effective strategies to engage research participants and their communities beyond the participant recruitment stage. Research is also needed to address how the views of local communities should be incorporated into future uses of human biological samples. Finally, studies evaluating the impact of CE on genetic research are lacking. Systematic evaluation of CE strategies is essential to determine the most effective models of CE for genetic and genomic research conducted in African settings.
Community Systems Strengthening for HIV Care: Experiences From Uganda
(Journal of Social Work in End-Of-Life & Palliative Care, 2013) Mburu, Gitau; Oxenham, Danielle; Hodgson, Ian; Nakiyemba, Alice; Seeley, Janet; Bermejo, Alvaro
The growing HIV burden on families and health systems is exerting a shift toward community caregivers, and is increasing the demand for functional community systems. In Uganda, where the number of people with HIV is increasing against a background of weak health systems, the role of community systems is poorly understood. We investigated the role of community systems in palliative care and the system elements required for an effective community response in Uganda. Qualitative interviews and focus group discussions were conducted among providers and recipients of palliative care, their family members, and governmental and community stakeholders in Mbale and Jinja, Uganda. Results showed that
Conducting in-depth interviews with and without voice recorders: a comparative analysis
(Qualitative Research, 2020) Rutakumwa, Rwamahe; Okello Mugisha, Joseph; Bernays, Sarah; Kabunga, Elizabeth; Tumwekwase, Grace; Mbonye, Martin; Seeley, Janet
The use of audio recordings has become a taken-for-granted approach to generating transcripts of in-depth interviewing and group discussions. In this paper we begin by describing circumstances where the use of a recorder is not, or may not be, possible, before sharing our comparative analysis of audio-recorded transcriptions and interview scripts made from notes taken during the interview (by experienced, well-trained interviewers). Our comparison shows that the data quality between audio-recorded transcripts and interview scripts written directly after the interview were comparable in the detail captured. The structures of the transcript and script were usually different because in the interview scripts, topics and ideas were grouped, rather than being in the more scattered order of the conversation in the transcripts. We suggest that in some circumstances not recording is the best approach, not ‘second best’
Dealing with disclosure: Perspectives from HIVpositive children and their older carers living in rural south-western Uganda
(African journal of AIDS research, 2016) Dusabe-Richards, Esther; Rutakumwa, Rwamahe; Zalwango, Flavia; Asiimwe, Allen; Kintu, Elvis; Ssembajja, Fatuma.; Seeley, Janet
There are limited data on the challenges faced by carers, in particular older carers, in managing the difficult task of status disclosure for HIV-positive children. We report findings from qualitative interviews with 18 care dyads of older people and HIV-positive children living in rural south-western Uganda. Our data provide insights into perceptions and norms influencing communication during and following disclosure among both carers and children, including those shaped by gendered expectations of girls’ and boys’ sexual behaviour. Young participants reported several advantages of knowing their status and showed considerable resilience in the face of HIV disclosure. Better and more support is needed to help health workers and carers (particularly older carers) manage cross-generational communication around HIV disclosure and other related aspects of sexual and reproductive health as critical aspects of children’s psychosocial development and well-being.
Despondency Among HIV-Positive Older Men and Women in Uganda
(Journal of Cross-Cultural Gerontology, 2012) Wright, Stuart; Zalwango, Flavia; Seeley, Janet; Mugisha, Joseph; Scholten, Francien
Forty people over 60 years of age took part in longitudinal research over the course of a year on the impact of the HIVepidemic in southern Uganda. In this paper we focus mainly on the data from 26 of the 40 who were HIV-positive. While we observed that feelings of depression were frequently experienced by many of the people in our study, the state of ‘being depressed’ was not constant. Participants regularly expressed economic frustration (because of a lack of money to buy food and other commodities including sugar and soap); medical problems (including those related to HIV) as well as old age, the burden of dependents (including concerns about school fees for grandchildren), feelings of sadness and isolation, and a lack of support from others, as well as stigma, whether real or perceived. However, while worries, sorrow and despondent thoughts were reported in many of the interviews across the study, moods fluctuated moving from happiness and hope, to sadness and despair, from month to month. Concerns regarding the psychological wellbeing amongst older people, including those living with HIVand older carers in Uganda deserve greater attention
Diagnosis of gestational diabetes in Uganda: The reactions of women, family members and health workers
(Women’s Health, 2021) Zalwango, Flavia; Seeley, Janet; Namara, Arthur; Kinra, Sanjay; Nyirenda, Moffat; Oakley, Laura
In Uganda, as in many other low- and middle-income countries, screening for gestational diabetes mellitus is suboptimal and is rarely embedded in routine antenatal care. We describe the experiences of women in Uganda who underwent screening for gestational diabetes mellitus and were diagnosed with the condition as they navigate both the reaction of family members and their interaction with health workers. Methods: Pregnant women aged 18 years or older and between 24 and 28 weeks of gestation were enrolled from the antenatal clinics at one of the five hospitals between 13 June 2018 and 31 October 2019. Ten women with gestational diabetes mellitus, ten family members and six health workers were purposively selected to take part. Interviews and focus group discussions were used to collect data on the socio-cultural and health system factors that influence timely screening and effective management of gestational diabetes mellitus in Uganda. Data were analysed thematically. Results: Women generally reflected on the importance of gestational diabetes mellitus screening and felt that an early diagnosis helped them to get timely medical attention, and most reported a positive experience of the care provided by health workers. However, women who were diagnosed with gestational diabetes mellitus reported feeling fearful and anxious, and some were worried that the condition might be life-threatening. Many women reported that they were upset and largely unprepared to receive a gestational diabetes mellitus diagnosis. A gestational diabetes mellitus diagnosis not only stirred intense feelings of fear and anxiety in women but also affected their spouses and other family members. Many male partners were sympathetic and willing to provide support. Conclusion: Our findings highlight the need to understand the perceptions and emotions that accompany a gestational diabetes mellitus diagnosis to best support women and their family members. An improved recognition of these factors can inform the development of effective gestational diabetes mellitus screening and management programmes.
Ethical and Practical Considerations Arising from Community Consultation on Implementing a Controlled Human Infection Studies using Schistosoma Mansoni in Uganda
(Global Bioethics, 2022) Egesa, Moses; Ssali, Agnes; Tumwesige, Edward; Kizza, Moses; Driciru, Emmanuella; Luboga, Fiona; Roestenberg, Meta; Seeley, Janet; Elliott, Alison M.
Issues related to controlled human infection studies using Schistosoma mansoni (CHI-S) were explored to ensure the ethical and voluntary participation of potential CHI-S volunteers in an endemic setting in Uganda. We invited volunteers from a fishing community and a tertiary education community to guide the development of informed consent procedures. Consultative group discussions were held to modify educational materials on schistosomiasis, vaccines and the CHI-S model and similar discussions were held with a test group. With both groups, a mock consent process was conducted. Fourteen in-depth key informant interviews and three group discussions were held to explore perceptions towards participating in a CHI-S. Most of the participants had not heard of the CHI-S. Willingness to take part depended on understanding the study procedures and the consenting process. Close social networks were key in deciding to take part. The worry of adverse effects was cited as a possible hindrance to taking part. Volunteer time compensation was unclear for a CHI-S. Potential volunteers in these communities are willing to take part in a CHI-S. Community engagement is needed to build trust and time must be taken to share study procedures and ensure understanding of key messages.
Ethical and Practical Considerations arising from Community Consultation on Implementing Controlled Human Infection Studies using Schistosoma Mansoni in Uganda
(Global Bioethics, 2022) Egesa, Moses; Ssali, Agnes; Tumwesige, Edward; Kizza, Moses; Driciru, Emmanuella; Luboga, Fiona; Roestenberg, Meta; Seeley, Janet; Elliott, Alison M.
Issues related to controlled human infection studies using Schistosoma mansoni (CHI-S) were explored to ensure the ethical and voluntary participation of potential CHI-S volunteers in an endemic setting in Uganda. We invited volunteers from a fishing community and a tertiary education community to guide the development of informed consent procedures. Consultative group discussions were held to modify educational materials on schistosomiasis, vaccines and the CHI-S model and similar discussions were held with a test group. With both groups, a mock consent process was conducted. Fourteen in-depth key informant interviews and three group discussions were held to explore perceptions towards participating in a CHI-S. Most of the participants had not heard of the CHI-S. Willingness to take part depended on understanding the study procedures and the consenting process. Close social networks were key in deciding to take part. The worry of adverse effects was cited as a possible hindrance to taking part. Volunteer time compensation was unclear for a CHI-S. Potential volunteers in these communities are willing to take part in a CHI-S. Community engagement is needed to build trust and time must be taken to share study procedures and ensure understanding of key messages.
Experiences of HIV-related stigma among HIV-positive older persons in Uganda – a mixed methods analysis
(Journal of Social Aspects of HIV/AIDS, 2014) Kuteesaa, Monica O.; Wright, Stuart; Seeley, Janet; Mugisha, Joseph; Kinyanda, Eugene; Kakembo, Frederick; Mwesigwa, Richard; Scholten, Francis
There is limited data on stigma among older HIV-infected adults in sub-Saharan Africa. We describe the experiences of stigma and disclosure in a cohort of HIV-positive older people in Uganda. Using data from the Wellbeing of Older Peoples’ Study of Kalungu (rural site) and Wakiso district (peri-urban site) residents, we measured self-reported stigma levels for 183 respondents (94 on antiretroviral therapy (ART); 88, not on ART) using a stigma score generated using three questions on stigma perceptions where 0 meant no stigma at all and 100 was maximum stigma. Based on two questions on disclosure, an overall score was computed. High disclosure was assigned to those who often or very often disclosed to the family and were never or seldom afraid to disclose elsewhere. We examined the experiences of HIV stigma of 25 adults (52% females) using semi-structured, open-ended interviews and monthly oral diaries over one year. Mean age of the respondents was 70 years (range 60–80 years) and 80% of all respondents were enrolled in ART. Interview transcripts were analysed using thematic content analysis. Overall, 55% of respondents had a high disclosure score, meaning they disclosed easily, and 47% had a high stigma score. The stigma scores were similar among those with high and low disclosure scores. In multivariate analyses with disclosure and stigma scores as dependent variables none of the respondents’ characteristics had a significant effect at the 5% level. Qualitative data revealed that stigma ranges from: (1) perceptions (relatively passive, but leading to behaviour such as gossip, especially if not intended maliciously); to (2) discriminatory behaviour (active or enacted stigma; from malicious gossip to outright discrimination). Despite the relatively high levels of disclosure, older people suffer from high levels of stigma of various forms apart from HIVrelated stigma. Efforts to assess for different forms of stigma at an individual level deserve greater attention from service providers and researchers, and must be context specific.

Browsing by Author "Seeley, Janet"

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