The framing and fashioning of therapeutic citizenship among people living with HIV taking Antiretroviral Therapy in Uganda

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 self-management 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 self-management, including adherence to ART. Positive framing institutions are important for many PLWH in resource-limited settings and the success of ART programs

PARENTING AND MONEY MAKING: SEX WORK AND WOMEN’S CHOICES IN URBAN UGANDA

Based upon detailed life histories of 100 Ugandan sex workers, this article documents women’s pathways into prostitution through marital separation and the need to support children via rural-urban migration to obtain wage work in Kampala. The money women got selling sex, and from other jobs they did, helped some to independently pay for their children’s school fees, their house rent and manage to feed their family without receiving support from partners. In their narratives women portrayed themselves as mothers, wives, partners, friends and workers with self-esteem and the hope of improvement in their lives through their own efforts

Exploring the Care Relationship between Grandparents/Older Carers and Children Infected with HIV in South-Western Uganda: Implications for Care for Both the Children and Their Older Carers

The care of children orphaned by HIV/AIDS in sub-Saharan Africa is often undertaken by grandparents, yet little is known about the care relationship between grandparent and grandchild. Our aim was to examine this relationship to understand the needs and responsibilities of both the HIV positive child and older carer and the nature of the relationship, and to assess the implications for care for the children and the older carers. A qualitative study was conducted with 40 purposively sampled children (13–17 years) and their older carers (50 years and above). Participants were recruited from two clinics in south-western Uganda. Up to three semi-structured interviews were held with each participant. Data were analysed using a thematic framework approach. We found that the care relationship was mostly reciprocal: HIV positive children depended on carers for basic and health needs and carers counted on the children for performing tedious household tasks. The relationship was also characterised by challenges, sometimes causing tension between child and carer. We conclude that: (1) interventions targeting HIV positive children need to also address the needs of older carers, and (2) carers and children would benefit from psychosocial support and social protection

Dealing with disclosure: Perspectives from HIV-positive children and their older carers living in rural south-western Uganda.

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

Men’s Involvement in a Parenting Programme to Reduce Child Maltreatment and Gender-Based Violence: Formative Evaluation in Uganda

AbstractParenting programmes involving fathers can reduce child maltreatment and gender-based violence. However, most parenting programmes find it difficult to recruit fathers. We piloted a 21 session parenting intervention, ‘Parenting for Respectability’, with fathers and mothers near Kampala, Uganda. Sixty-one fathers and 83 mothers were recruited initially and 52 fathers and 76 mothers retained to the end. We interviewed with 24 fathers and 16 mothers. Data were analysed thematically. Success in involving fathers was probably due to (a) the first 10 sessions being father-only, allowing them to share experiences before participating in mixed-sex sessions; (b) exploiting men’s pre-existing motivation to improve their children’s behaviour, thereby enhancing family respectability; and (c) the interactive, participatory delivery. Mixed sessions enabled couples to clarify conflicting perspectives regarding spousal relationships and gendered norms. However, men experienced social pressure to conform to conventional masculinity, suggesting the need to instil intervention values at community level. </jats:p

Diagnosis of gestational diabetes in Uganda: The reactions of women, family members and health workers.

OBJECTIVES: 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

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

Background: 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 cross-sectional 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 multi-disciplinary 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

The role of children in their HIV-positive parents’ management of antiretroviral therapy in Uganda

Adjustment to life on antiretroviral therapy (ART) and living with HIV as a long-term chronic condition, pose significant medical, social and economic challenges. We investigated children’s role in supporting HIV-positive parents to self-manage life on ART. Between 2010 and 2012, we conducted a qualitative study using semi-structured interviews with 38 HIV-positive parents who had been on ART for over a year. They were randomly selected from people accessing ART from three delivery sites in Wakiso district, Uganda. Data were analysed thematically. Participants reported children between the ages of 1 and 47 years providing support. Children were a source of happiness, self-worth, encouragement, and comfort. Both younger and older children supported parents’ adherence to treatment through reminding them to take the drugs and honour clinic appointments. Older children provided money to buy medication, food and shelter. Parents reported that the encouragement they received after they disclosed to their children enhanced their survival. After HIV disclosure to their children many of their fears about the future were allayed. Thinking about their children’s future brought hope. However, looking after younger children while on ART could be burdensome since some parents could not work to their full capacity due to reduced physical health. Children are an important resource in their parents’ adjustment to living with HIV while taking ART. There is a need for children to be supported by appropriate policy and other social and health development structures

Women living with HIV, diabetes and/or hypertension multi-morbidity in Uganda: a qualitative exploration of experiences accessing an integrated care service

Purpose: Women experience a triple burden of ill-health spanning non-communicable diseases (NCDs), reproductive and maternal health conditions and human immunodeficiency virus (HIV) in sub-Saharan Africa. Whilst there is research on integrated service experiences of women living with HIV (WLHIV) and cancer, little is known regarding those of WLHIV, diabetes and/or hypertension when accessing integrated care. Our research responds to this gap. Design/methodology/approach: The INTE-AFRICA project conducted a pragmatic parallel arm cluster randomised trial to scale up and evaluate “one-stop” integrated care clinics for HIV-infection, diabetes and hypertension at selected primary care centres in Uganda. A qualitative process evaluation explored and documented patient experiences of integrated care for HIV, diabetes and/or hypertension. In-depth interviews were conducted using a phenomenological approach with six WLHIV with diabetes and/or hypertension accessing a “one stop” clinic. Thematic analysis of narratives revealed five themes: lay health knowledge and alternative medicine, community stigma, experiences of integrated care, navigating personal challenges and health service constraints. Findings: WLHIV described patient pathways navigating HIV and diabetes/hypertension, with caregiving responsibilities, poverty, travel time and cost and personal ill health impacting on their ability to adhere to multi-morbid integrated treatment. Health service barriers to optimal integrated care included unreliable drug supply for diabetes/hypertension and HIV linked stigma. Comprehensive integrated care is recommended to further consider gender sensitive aspects of care. Originality/value: his study whilst small scale, provides a unique insight into the lived experience of WLHIV navigating care for HIV and diabetes and/or hypertension, and how a “one stop” integrated care clinic can support them (and their children) in their treatment journeys

“After all, we are all sick”: multi-stakeholder understanding of stigma associated with integrated management of HIV, diabetes and hypertension at selected government clinics in Uganda

Background: Integrated care is increasingly used to manage chronic conditions. In Uganda, the integration of HIV, diabetes and hypertension care has been piloted, to leverage the advantages of well facilitated and established HIV health care provision structures. This qualitative study aimed to explore HIV stigma dynamics whilst investigating multi-stakeholder perceptions and experiences of providing and receiving integrated management of HIV, diabetes and hypertension at selected government clinics in Central Uganda. Methods: We adopted a qualitative-observational design. Participants were purposively selected. In-depth interviews were conducted with patients and with health care providers, clinical researchers, policy makers, and representatives from international nongovernmental organizations (NGOs). Focus group discussions were conducted with community members and leaders. Clinical procedures in the integrated care clinic were observed. Data were managed using Nvivo 12 and analyzed thematically. Results: Triangulated findings revealed diverse multi-stakeholder perceptions around HIV related stigma. Integrated care reduced the frequency with which patients with combinations of HIV, diabetes, hypertension visited health facilities, reduced the associated treatment costs, increased interpersonal relationships among patients and healthcare providers, and increased the capacity of health care providers to manage multiple chronic conditions. Integration reduced stigma through creating opportunities for health education, which allayed patient fears and increased their resolve to enroll for and adhere to treatment. Patients also had an opportunity to offer and receive psycho-social support and coupled with the support they received from healthcare worker. This strengthened patient-patient and provider-patient relationships, which are building blocks of service integration and of HIV stigma reduction. Although the model significantly reduced stigma, it did not eradicate service level challenges and societal discrimination among HIV patients. Conclusion: The study reveals that, in a low resource setting like Uganda, integration of HIV, diabetes and hypertension care can improve patient experiences of care for multiple chronic conditions, and that integrated clinics may reduce HIV related stigma