Social networks, mobility, and HIV risk among women in the fishing communities of Lake Victoria.

BACKGROUND: Population mobility is a demonstrated barrier to reducing HIV incidence. A clear understanding of social networks and their influence on mobility among women in the fishing communities of Lake Victoria may contribute to tailoring effective interventions that suit the needs of these mobile women. METHODS: A cross-sectional qualitative methods study was conducted to understand mobility patterns among women resident and or working in fishing communities of Lake Victoria in Kenya, Tanzania, and Uganda. The study was conducted in six fishing communities from March 2018 to June 2019. The communities were purposively selected, based on population size (1000 people or more) and HIV prevalence of > 15% among women aged 18 years or older who had lived in the fishing community for at least six months. In-depth interviews were conducted with 24 key informants and 72 women from the sites in the three countries. Questions focused on women's social networks and other factors that fuelled or facilitated women's mobility as well as challenges they faced due to mobility. Data analysis followed a thematic framework approach. RESULTS: Different social groupings/networks existed among women in the fishing communities of Lake Victoria. These included female sex workers, women fish processors/traders, women bar workers/owners, restaurant workers, and family networks. Networks encouraged mobility, supporting finding work opportunities, but also increased sexual risks through partner changes. The benefits of networks included information sharing, financial support, and group protection, especially against violence. CONCLUSION: Social networks and groupings among women in the fishing communities of Lake Victoria could be useful in tailoring HIV prevention and HIV care interventions to suit the needs of these highly mobile populations.

Understanding mobility and sexual risk behaviour among women in fishing communities of Lake Victoria in East Africa: a qualitative study.

BACKGROUND: HIV-prevalence and incidence is high in many fishing communities around Lake Victoria in East Africa. In these settings, mobility among women is high and may contribute to increased risk of HIV infection and poor access to effective prevention and treatment services. Understanding the nature and patterns of this mobility is important for the design of interventions. We conducted an exploratory study to understand the nature and patterns of women's mobility to inform the design of HIV intervention trials in fishing communities of Lake Victoria. METHODS: This was a cross-sectional formative qualitative study conducted in six purposively selected fishing communities in Kenya, Tanzania and Uganda. Potential participants were screened for eligibility on age (18+ years) and having stayed in the fishing community for more than 6 months. We collected data using introductory and focus group discussions, and in-depth interviews with key informants. Data focused on: history and patterns of mobility, migration in and out of fishing communities and the relationship between mobility and HIV infection. Since the interviews and discussions were not audio-recorded, detailed notes were taken and written up into full scripts for analysis. We conducted a thematic analysis using constant comparison analysis. RESULTS: Participants reported that women in fishing communities were highly mobile for work-related activities. Overall, we categorized mobility as travels over long and short distances or periods depending on the kind of livelihood activity women were involved in. Participants reported that women often travelled to new places, away from familiar contacts and far from healthcare access. Some women were reported to engage in high risk sexual behaviour and disengaging from HIV care. However, participants reported that women often returned to the fishing communities they considered home, or followed a seasonal pattern of work, which would facilitate contact with service providers. CONCLUSION: Women exhibited circular and seasonal mobility patterns over varying distances and duration away from their home communities. These mobility patterns may limit women's access to trial/health services and put them at risk of HIV-infection. Interventions should be tailored to take into account mobility patterns of seasonal work observed in this study.

What causes non-adherence among some individuals on long term antiretroviral therapy? Experiences of individuals with poor viral suppression in Uganda.

BACKGROUND: Antiretroviral therapy (ART) use by people living with HIV reduces HIV transmission, morbidity, mortality, and improves quality of life. Good ART adherence is required to achieve these benefits. We investigated how the environmental, social, economic and behavioural experiences of people living with HIV with poor viral suppression could explain their non-adherence to long term ART. METHODS: This qualitative cross-sectional study was conducted in Uganda between September 2015 and April 2016. Thirty individuals on ART for 5 years or more (10 on first line and 20 on second line), with poor viral suppression, were randomly selected from a cohort of people living with HIV on ART. In-depth interviews about ART; awareness, adherence counselling, obstacles to daily adherence and regimen switches were conducted. Emerging themes from the interviews transcripts and field notes were identified and thematic content analysis done. Participants' consent, compensation, confidentiality and study ethical approvals were ensured. RESULTS: We found that poor adherence to long term ART was due to: travel for work or social activities, stigma, receiving little or no continuous ART adherence education, alcohol consumption and use of alternative 'HIV cure' medicines. Other reasons included; ART side effects, treatment fatigue, belief that long-term ART or God can 'cure HIV', and food security. CONCLUSIONS: Achieving optimal ART benefits requires continuous provision of ART adherence education to individuals on long term ART. This helps them overcome the challenges related to living with HIV: worries of food insecurity, alcohol misuse, economic hardship, and beliefs in HIV cures and use of unproven alternative HIV treatments. People living with HIV who travel require adherence support and larger quantities of ART refills to cover their time away.

Finding women in fishing communities around Lake Victoria: "Feasibility and acceptability of using phones and tracking devices".

INTRODUCTION: Women in fishing communities have both high HIV prevalence and incidence, hence they are a priority population for HIV prevention and treatment interventions. However, their mobility is likely to compromise the effectiveness of interventions. We assessed the acceptability, feasibility and of using phones and global positioning system (GPS) devices for tracking mobility, to inform future health research innovations. METHODS: A mult-site formative qualitative study was conducted in six purposively selected Fishing Communities on the shores of Lake Victoria in Kenya, Tanzania, and Uganda. Participants were selected based on duration of stay in the community and frequency of movement. Sixty-four (64) women participated in the study (16 per fishing community). Twenty-four (24) participants were given a study phone; 24 were asked to use their own phones and 16 were provided with a portable GPS device to understand what is most preferred. Women were interviewed about their experiences and recommendations on carrying GPS devices or phones. Twenty four (24) Focus Group Discussions with 8-12 participants were conducted with community members to generate data on community perceptions regarding GPS devices and phones acceptability among women. Data were analyzed thematically and compared across sites/countries. RESULTS: Women reported being willing to use tracking devices (both phones and GPS) because they are easy to carry. Their own phone was preferred compared to a study phone and GPS device because they were not required to carry an additional device, worry about losing it or be questioned about the extra device by their sexual partner. Women who carried GPS devices suggested more sensitization in communities to avoid domestic conflicts and public concern. Women suggested changing the GPS colour from white to a darker colour and, design to look like a commonly used object such as a telephone Subscriber Identity Module (SIM) card, a rosary/necklace or a ring for easy and safe storage. CONCLUSION: Women in the study communities were willing to have their movements tracked, embraced the use of phones and GPS devices for mobility tracking. Devices need to be redesigned to be more discrete, but they could be valuable tools to understanding movement patterns and inform design of interventions for these mobile populations.

Stigma trajectories among people living with HIV (PLHIV) embarking on a life time journey with antiretroviral drugs in Jinja, Uganda.

BACKGROUND: Stigma is a barrier to HIV prevention and treatment. There is a limited understanding of the types of stigma facing people living with HIV (PLHIV) on antiretroviral therapy (ART). We describe the stigma trajectories of PLHIV over a 5-year period from the time they started ART. METHODS: Longitudinal qualitative in-depth interviews were conducted with 41 members of The AIDS Support Organisation (TASO) from 2005 to 2008 in Jinja, Uganda, who were part of a pragmatic cluster-randomised trial comparing two different modes of ART delivery (facility and home). Participants were stratified by gender, ART delivery arm and HIV stage (early or advanced) and interviewed at enrolment on to ART and then after 3, 6, 18 and 30 months. Interviews focused on stigma and ART experiences. In 2011, follow-up interviews were conducted with 24 of the participants who could be traced. Transcribed texts were translated, coded and analyzed thematically. RESULTS: Stigma was reported to be very high prior to starting ART, explained by visible signs of long-term illnesses and experiences of discrimination and abuse. Early coping strategies included: withdrawal from public life, leaving work due to ill health and moving in with relatives. Starting ART led to a steady decline in stigma and allowed the participants to take control of their illness and manage their social lives. Better health led to resumption of work and having sex but led to reduced disclosure to employers, colleagues and new sexual partners. Some participants mentioned sero-sorting in order to avoid questions around HIV sero-status. A rise in stigma levels during the 18 and 30 month interviews may be correlated with decreased disclosure. By 2011, ART-related stigma was even more pronounced particularly among those who had started new sexual relationships, gained employment and those who had bodily signs from ART side-effects. CONCLUSION: This study has shown that while ART comes with health benefits which help individuals to get rid of previously stigmatising visible signs, an increase in stigma may be noticed after about five years on ART, leading to reduced disclosure. ART adherence counselling should reflect changing causes and manifestations of stigma over time.

'It is like a tomato stall where someone can pick what he likes': structure and practices of female sex work in Kampala, Uganda.

BACKGROUND: Effective interventions among female sex workers require a thorough knowledge of the context of local sex industries. We explore the organisation of female sex work in a low socio-economic setting in Kampala, Uganda. METHODS: We conducted a qualitative study with 101 participants selected from an epidemiological cohort of 1027 women at high risk of HIV in Kampala. Repeat in-depth life history and work practice interviews were conducted from March 2010 to June 2011. Context specific factors of female sex workers' day-to-day lives were captured. Reported themes were identified and categorised inductively. RESULTS: Of the 101 women, 58 were active self-identified sex workers operating in different locations within the area of study and nine had quit sex work. This paper focuses on these 67 women who gave information about their involvement in sex work. The majority had not gone beyond primary level of education and all had at least one child. Thirty one voluntarily disclosed that they were HIV-positive. Common sex work locations were streets/roadsides, bars and night clubs. Typically sex occurred in lodges near bars/night clubs, dark alleyways or car parking lots. Overall, women experienced sex work-related challenges at their work locations but these were more apparent in outdoor settings. These settings exposed women to violence, visibility to police, a stigmatising public as well as competition for clients, while bars provided some protection from these challenges. Older sex workers tended to prefer bars while the younger ones were mostly based on the streets. Alcohol consumption was a feature in all locations and women said it gave them courage and helped them to withstand the night chill. Condom use was determined by clients' willingness, a woman's level of sobriety or price offered. CONCLUSIONS: Sex work operates across a variety of locations in the study area in Kampala, with each presenting different strategies and challenges for those operating there. Risky practices are present in all locations although they are higher on the streets compared to other locations. Location specific interventions are required to address the complex challenges in sex work environments.

Understanding the drivers of preferential migration of people living with HIV to fishing communities of Lake Victoria in Uganda.

Fishing communities around Lake Victoria have among the highest burdens of HIV globally. Growing evidence suggests that high HIV prevalence is partially due to selective migration of people living with HIV to fishing communities. However, the reasons for this preferential migration are unclear. We recruited 60 men and women for qualitative in-depth interviews (30% living with HIV; 70% recent migrants of unknown HIV status) from seven Ugandan fishing communities. Interviews discussed mobility histories and the social context surrounding migration. Interviews were audio-recorded, transcribed, and translated. A version of the 'Push-Pull' theory of migration helped structure a conceptual thematic framework for data analysis. Unfavourable conditions related primarily to stigma, social discrimination, humiliation, rejection or HIV labelling, and violence, induced individuals to leave their home communities. Factors which eventually resulted in migration to fishing communities included anticipating less HIV-related stigma and a safe, friendly environment that accommodates all people. Access to healthy food (fish) and the perceived availability of community-based HIV care services were also attractions. We found that stigma is the major social phenomenon shaping preferential migration to fishing communities in Uganda.

Acceptability and applicability of biometric iris scanning for the identification and follow up of highly mobile research participants living in fishing communities along the shores of Lake Victoria in Kenya, Tanzania, and Uganda.

BACKGROUND: Recruitment and retention of participants in research studies conducted in fishing communities remain a challenge because of population mobility. Reliable and acceptable methods for identifying and tracking participants taking part in HIV prevention and treatment research are needed. The study aims to assess the acceptability, and technical feasibility of iris scans as a biometric identification method for research participants in fishing communities. METHODS: This was a cross-sectional study conducted in eight fishing communities in Kenya, Tanzania, and Uganda, with follow-up after one month in a randomly selected subset of participants. All consenting participants had their iris scanned and then responded to the survey. RESULTS: 1,199 participants were recruited. The median age was 33 [Interquartile range (IQR) 24-42] years; 56% were women. The overall acceptability of iris scanning was 99%, and the success rate was 98%. Eighty one percent (n = 949) had a successful scan on first attempt, 116 (10%) on second and 113 (9%) after more than two attempts. A month later, 30% (n = 341) of participants were followed up. The acceptability of repeat iris scanning was 99% (n = 340). All participants who accepted repeat iris scanning had successful scans, with 307 (90%) scans succeeding on first attempt; 25 (7%) on second attempt, and 8 (2%) after several attempts. The main reason for refusing iris scanning was fear of possible side effects of the scan on the eyes or body. CONCLUSION: The acceptability and applicability of biometric iris scan as a technique for unique identification of research participants is high in fishing communities. However, successful use of the iris scanning technology in research will require education regarding the safety of the procedure.

Assessing acceptability of pre-exposure prophylaxis (PrEP) among participants in an HIV vaccine preparedness study in southwestern Uganda.

BACKGROUND: 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.

Are treatment supporters relevant in long-term Antiretroviral Therapy (ART) adherence? Experiences from a long-term ART cohort in Uganda.

BACKGROUND: This study aimed to understand the relevance of treatment supporters in adherence among people living with HIV taking Anti-retroviral therapy (ART) for more than five years in Uganda. METHODS: In-depth interviews were conducted with 50 participants (28 women and 22 men) of the Complications of Long-Term ART (CoLTART) cohort with experience of at least five years on ART in Uganda. Participants were stratified by line of ART regimen and viral loads of less or above 1000 copies/ml. Data were analyzed thematically. RESULTS: Many participants felt that a treatment supporter was most useful at the beginning of therapy before individuals get used to the drugs or when they are still weak. However, this did not reflect treatment outcomes, as many individuals without treatment supporters had failed on first line ART regimens and were switched to second line ART. Those who were still on first line had viral loads of ≥1000 copies/ml. There was a preference for female treatment supporters, many of who were persistent in their supportive role. CONCLUSION: Treatment supporters remain important in adherence to long-term ART. HIV-care providers need to encourage the involvement of a treatment supporter for individuals taking ART long-term.

Maternal experiences of caring for an infant with neurological impairment after neonatal encephalopathy in Uganda: a qualitative study.

PURPOSE: The study investigated maternal experiences of caring for a child affected by neurological impairment after neonatal encephalopathy (NE) ("birth asphyxia") in Uganda. METHODS: Between September 2011 and October 2012 small group and one-on-one in-depths interviews were conducted with mothers recruited to the ABAaNA study examining outcomes from NE in Mulago hospital, Kampala. Data were analysed thematically with the aid of Nvivo 8 software. FINDINGS: Mothers reported caring for an infant with impairment was often complicated by substantial social, emotional and financial difficulties and stigma. High levels of emotional distress, feelings of social isolation and fearfulness about the future were described. Maternal health-seeking ability was exacerbated by high transport costs, lack of paternal support and poor availability of rehabilitation and counselling services. Meeting and sharing experiences with similarly affected mothers was associated with more positive maternal caring experiences. CONCLUSION: Mothering a child with neurological impairment after NE is emotionally, physically and financially challenging but this may be partly mitigated by good social support and opportunities to share caring experiences with similarly affected mothers. A facilitated, participatory, community-based approach to rehabilitation training may have important impacts on maximising participation and improving the quality of life of affected mothers and infants. Implications for Rehabilitation Caring for an infant with neurological impairment after NE in Uganda has substantial emotional, social and financial impacts on families and is associated with high levels of emotional stress, feelings of isolation and stigma amongst mothers. Improved social support and the opportunity to share experiences with other similarly affected mothers are associated with a more positive maternal caring experience. High transport costs, lack of paternal support and poor availability of counselling and support services were barriers to maternal healthcare seeking. Studies examining the feasibility, acceptability and impact of early intervention programmes are warranted to maximise participation and improve the quality of life for affected mothers and their infants.

Balancing rigour and acceptability: the use of HIV incidence to evaluate a community-based randomised trial in rural Uganda.

Recent debate about the evaluation of community based, HIV/AIDS behavioural interventions has focused on the appropriateness of the randomised controlled trial (RCT) design, and the difficulty of obtaining reliable outcome measures. A community based HIV AIDS behavioural change RCT, recently conducted in rural Uganda, used HIV incidence as the principal outcome measure. This paper examines the acceptability of the trial from the community perspective. It asks whether, in a rural African setting, it is possible to implement a scientifically rigorous evaluation without compromising acceptability of the trial to the community. Opinions of the trial held by community members working as trial field workers were collected by semi-structured interview (n = 37), and focus group discussions (4) Community opinions of the trial were ascertained through 10 focus groups. For both field workers and the community, the sero-survey was more salient than the intervention, and the source of many rumours and disputes. Despite intensive mobilisation and close monitoring of field workers, it was impossible to ensure the veracity of explanations about the survey at ground level, and to protect each individual from coercion. The community expected a reward in return on their blood. Although the introduction of incentives at the final survey round increased the acceptability of the trial, they not only created jealousies and tensions, but also led to expectations of greater rewards in future. We conclude that RCTs in poor, rural communities are feasible, but the challenges involved should not be underestimated. Obtaining community support for the trial, respecting established hierarchies, and close supervision of field workers are all essential, but even then, controversies should be anticipated. There is an urgent need for relevant guidelines to help researchers navigate the complex ethical issues involved.

Exploring the community response to a randomized controlled HIV/AIDS intervention trial in rural Uganda.

Investigators need, both for ethical and methodological reasons, to consider the acceptability of their intervention to the study population. We explored the response to a community-based randomized controlled trial (RCT) of an HIV/AIDS behavioral change intervention in rural Uganda. The views of field-workers, trial community, nongovernment organization representatives, and religious leaders were explored via focus groups (13) and interviews (45). The results suggest that the components of the intervention valued by the community are not necessarily those prioritised by trial implementers. Specifically, prevention activities appear to be valued less than material assistance. Furthermore, universal acceptance of the trial is probably unattainable. For these reasons, sensitive mobilization, respect for community members and their appointed leaders, and ongoing communication is essential. We suggest that evaluations of process be regarded as essential to the conduct of community-based RCTs and highlight the need for appropriate evaluation indicators to facilitate this.

Gender inequity in the lives of women involved in sex work in Kampala, Uganda.

BACKGROUND: Gender inequity is manifested in the social and economic burden women carry in relation to men. We investigate women's experiences of gender relations from childhood to adult life and how these may have led to and kept women in sex work. METHODS: Participants were drawn from an ongoing epidemiological cohort study of women working in high HIV/STI risk environments in Kampala. From over 1000 enrolled women, we selected 101 for a qualitative sub-study. This analysis focuses on 58 women who engaged in sex work either as a main job or as a side job. In-depth life history interviews were conducted to capture points of vulnerability that enhance gender inequity throughout their lives. RESULTS: Most participants were young, single parents, poorly educated, who occupied low skilled and poorly paying jobs. All women knew their HIV status and they disclosed this in the interview; 31 were uninfected while 27 said they were infected. Parental neglect in childhood was reported by many. Participants described experiences of violence while growing up sometimes perpetuated by relatives and teachers. Early unwanted pregnancies were common and for many led to leaving school. Some women stated a preference for multiple and short-term money-driven sexual relationships. Needing to earn money for child care was often the main reason for starting and persisting with sex work. Violence perpetrated by clients and the police was commonly reported. Alcohol and drug use was described as a necessary "evil" for courage and warmth, but sometimes this affected clear decision making. Many felt powerless to bargain for and maintain condom use. Leaving sex work was considered but rarely implemented. CONCLUSIONS: Inequities in gender and power relations reduce economic and social opportunities for better lives among women and increase risky sexual behaviour. Interventions focused on these inequities that also target men are crucial in improving safer practices and reducing risk.