Being an 'adolescent': The consequences of gendered risks for young people in rural Uganda.

The behaviour of adolescents is recognised increasingly as having substantial and long-term consequences for their health. We examined the meaning of 'adolescence' in southern Uganda with HIV-positive young people aged 11-24 years. Adolescent girls and boys are described differently in the local language (Luganda). Adolescence is described as a behavioural rather than a life course category and an inherently dangerous one. The practices, risks and consequences of 'adolescent' behaviour are highly gendered. Local understandings of adolescence are likely to have a significant impact on the efficacy of interventions designed to minimise their 'risky behaviour'

How Follow-Up Counselling Increases Linkage to Care Among HIV-Positive Persons Identified Through Home-Based HIV Counselling and Testing: A Qualitative Study in Uganda

We investigated how follow-up counselling had increased linkage to HIV care in a trial of referral to care and follow-up counseling, compared to referral to care only, for participants diagnosed as HIV-positive through home-based HIV counseling and testing. We carried out a cross-sectional qualitative study. Using random stratified sampling, we selected 43 trial participants (26 [60%] in the intervention arm). Sample stratification was by sex, distance to an ART facility, linkage, and nonlinkage to HIV care. Twenty-six in-depth interviews were conducted with participants in the intervention arm: 17 people who had linked to HIV care and 9 who had not linked after 6 months of follow-up. Home-based follow-up counseling helped to overcome worries resulting from an HIV-positive test result. In addition, the counseling offered an opportunity to address questions on HIV treatment side effects, share experiences of intimate partner violence or threats, and general problems linking to care. The counselling encouraged early linkage to HIV care and use of biomedical medicines, discouraging alternative medicine usage. Home-based follow-up counseling also helped to promote HIV sero-status disclosure, facilitating linkage to, retention in and adherence to HIV care and treatment. This study successfully demonstrated that home-based follow-up counselling increased linkage to care through encouragement to seek care, provision of accurate information about HIV care services and supporting the person living with HIV to disclose and manage stigma. </jats:p

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

Gender, land and responses to health and environmental shocks in rural South Western Uganda

We examine the gendered responses to shocks – including HIV-related illness and death, and environmental factors such as drought or too much rain – and how women in south western Uganda navigate structural barriers such as the gender constraints in land ownership, to cope with the impact of shocks. The study is based on data drawn from households selected from a General Population Cohort of 20,000 people in Kalungu District. As part of a larger study investigating the impact of HIV on agricultural livelihoods, 22 households were purposively sampled for a qualitative study. These households were stratified by sex of household head and by a death having occurred/not occurred of an HIV-positive individual in the household. Our findings show the gendered dimensions in household responses to crises are shaped by women and men’s position in the social structure in general and within their families and households. Women can make effective use of their social relations to obtain material support and information to improve their family’s livelihood

Faithfulness without sexual exclusivity: gendered interpretations of faithfulness in rural south-western Uganda, and implications for HIV prevention programmes

This article explores gendered meanings of both faithfulness and sexual exclusivity within intimate long-term relationships, and the implications for HIV prevention messaging. In 2011–12, in-depth interviews were conducted with a random sample of 50 men and women (52 per cent women) in long-term relationships in rural Uganda. Confirming prior research, we found that a double standard exists for sexual exclusivity, where men define faithfulness to mean strict sexual exclusivity by their wife, but women defined it as being for both partners. However, both men and women defined fidelity to imply continued support. Fidelity was perceived to be intact if a man continued to provide material support, despite not being sexually exclusive. These findings highlight the limitations of HIV prevention strategies that emphasise faithfulness, where faithfulness is not synonymous with sexual exclusivity.</jats:p

'I wanted to safeguard the baby': a qualitative study to understand the experiences of Option B+ for pregnant women and the potential implications for 'test-and-treat' in four sub-Saharan African settings.

OBJECTIVE: To explore what influences on engagement with Option B+ in four sub-Saharan African settings. METHODS: In-depth interviews were conducted in 2015, with 22 HIV-positive women who had been pregnant since Option B+ was available, and 15 healthcare workers (HCWs) involved in HIV service delivery. Participants were purposely selected from four health and demographic surveillance sites in Malawi, Tanzania and Uganda. A thematic content analysis was conducted to investigate what influenced engagement with Option B+. RESULTS: Feeling 'ready' was key to pregnant women accepting antiretroviral treatment (ART) on the same day as diagnosis at antenatal clinic; this was influenced by previous knowledge of HIV-positive status, interactions with HCWs and relationship with their partners. The desire to protect their unborn infant was the main issue that motivated women to initiate treatment, temporarily over-riding barriers to starting ART. Many HCWs recognised that pressurising women into starting ART may lead them to stop treatment following delivery. However, their own responsibility to protect the infant sometimes drove HCWs to use strong persuasive techniques to initiate pregnant women onto ART as early as possible, occasionally causing women to disengage. CONCLUSIONS: Protecting the baby superseded feelings of unpreparedness for lifelong ART and may explain poor retention observed in Option B+ programmes. Women may benefit from more time to accept their status, and counselling on the long-term value of ART beyond the pregnancy and breastfeeding period. Strategies to promote readiness for same-day initiation of lifelong treatment are urgently needed, and may provide important lessons for universal test-and-treat implementation

Where are we now? A multicountry qualitative study to explore access to pre-antiretroviral care services: a precursor to antiretroviral therapy initiation.

OBJECTIVE: To explore barriers and facilitators to accessing postdiagnosis HIV care in five sub-Saharan African countries. METHODS: In-depth interviews were conducted with 77 people living with HIV (PLHIV) in pre-antiretroviral therapy care or not-yet-in care and 46 healthcare workers. Participants were purposely selected from health and demographic surveillance sites in Karonga (Malawi), Manicaland (Zimbabwe), uMkhanyakude (South Africa), Kisesa (Tanzania) and Rakai and Kyamulibwa (Uganda). Thematic content analysis was conducted, guided by the constructs of affordability, availability and acceptability of care.- RESULTS: Affordability: Transport and treatment costs were a barrier to HIV care, although some participants travelled to distant clinics to avoid being seen by people who knew them or for specific services. Broken equipment and drug stock-outs in local clinics could also necessitate travel to other facilities. Availability: Some facilities did not offer full HIV care, or only offered all services intermittently. PLHIV who frequently travelled complained that care was seldom available to them in places they visited. Acceptability: Severe pain or sickness was a key driver for accessing postdiagnosis care, whereas asymptomatic PLHIV often delayed care-seeking. A belief in witchcraft was a deterrent to accessing clinical care following diagnosis. Changing antiretroviral therapy guidelines generated uncertainty among PLHIV about when to start treatment and delayed postdiagnosis care. PLHIV reported that healthcare workers' knowledge, attitudes and behaviours, and their ability to impart health education, also influenced whether they accessed HIV care. CONCLUSION: Despite efforts to decentralise services over the past decade, many barriers to accessing HIV care persist. There is a need to increase sustained access to care for PLHIV not yet on treatment, with initiatives that encompass biomedical aspects of care alongside considerations for individual and collective challenges they faced. A failure to do so may undermine efforts to achieve universal access to antiretroviral therapy

'Side effects' are 'central effects' that challenge retention in HIV treatment programmes in six sub-Saharan African countries: a multicountry qualitative study.

OBJECTIVES: To explore the bodily and relational experience of taking antiretroviral therapy (ART) and the subsequent effect on retention in HIV care in six sub-Saharan African countries. METHODS: In-depth interviews were conducted with 130 people living with HIV (PLHIV) who had initiated ART, 38 PLHIV who were lost to follow-up and 53 healthcare workers (HCWs) in Kenya, Uganda, Tanzania, Malawi, Zimbabwe and South Africa. PLHIV were purposely selected to include a range of HIV treatment histories. Deductive and inductive analysis was guided by aspects of practice theory; retention in HIV care following ART initiation was the practice of interest. RESULTS: PLHIV who were engaged in HIV care took ART every day, attended clinic appointments and ate as well as possible. For PLHIV, biomedical markers acted as reassurance for their positive treatment progression. However, many described ART side effects ranging from dizziness to conditions severe enough to prevent them from leaving home or caring for themselves or others. In all settings, the primary concern of HCW was ensuring patients achieved viral suppression, with management of side effects seen as a lower priority. Where PLHIV tolerated side effects, they were deemed the lesser of two evils compared with their pre-ART illnesses. Participants who reported feeling well prior to starting ART were often less able to tolerate side effects, and in many cases these events triggered their disengagement from HIV care. CONCLUSIONS: Retention in ART care is rarely an outcome of rational decision-making, but the consequence of bodily and relational experiences. Initiatives to improve retention should consider how bodily experiences of PLHIV relate to the rest of their lives and how this can be respected and supported by service providers to subsequently improve retention in care

"He was no longer listening to me": A qualitative study in six Sub-Saharan African countries exploring next-of-kin perspectives on caring following the death of a relative from AIDS.

In the era of widespread antiretroviral therapy, few studies have explored the perspectives of the relatives involved in caring for people living with HIV (PLHIV) during periods of ill-health leading up to their demise. In this analysis, we explore the process of care for PLHIV as their death approached, from their relatives' perspective. We apply Tronto's care ethics framework that distinguishes between care-receiving among PLHIV on the one hand, and caring about, caring for and care-giving by their relatives on the other. We draw on 44 in-depth interviews conducted with caregivers following the death of their relatives, in seven rural settings in Eastern and Southern Africa. Relatives suggested that prior to the onset of poor health, few of the deceased had disclosed their HIV status and fewer still were relying on anyone for help. This lack of disclosure meant that some caregivers spoke of enduring a long period of worry, and feelings of helplessness as they were unable to translate their concern and "caring about" into "caring for". This transition often occurred when the deceased became in need of physical, emotional or financial care. The responsibility was often culturally prescribed, rarely questioned and usually fell to women. The move to "care-giving" was characterised by physical acts of providing care for their relative, which lasted until death. Tronto's conceptualisation of caring relationships highlights how the burden of caring often intensifies as family members' caring evolves from "caring about", to "caring for", and eventually to "giving care" to their relatives. This progression can lead to caregivers experiencing frustration, provoking tensions with their relatives and highlighting the need for interventions to support family members caring for PLHIV. Interventions should also encourage PLHIV to disclose their HIV status and seek early access to HIV care and treatment services

Traditional healers, faith healers and medical practitioners: the contribution of medical pluralism to bottlenecks along the cascade of care for HIV/AIDS in Eastern and Southern Africa.

OBJECTIVES: There are concerns that medical pluralism may delay patients' progression through the HIV cascade-of-care. However, the pathways of impact through which medical pluralism influence the care of people living with HIV (PLHIV) in African settings remain unclear. We sought to establish the manifestation of medical pluralism among PLHIV, and explore mechanisms through which medical pluralism contributes bottlenecks along the HIV care cascade. METHODS: We conducted a multicountry exploratory qualitative study in seven health and demographic surveillance sites in six eastern and southern African countries: Uganda, Kenya, Tanzania, Malawi, Zimbabwe and South Africa. We interviewed 258 PLHIV at different stages of the HIV cascade-of-care, 48 family members of deceased PLHIV and 53 HIV healthcare workers. Interviews were conducted using shared standardised topic guides, and data managed through NVIVO 8/10/11. We conducted a thematic analysis of healthcare pathways and bottlenecks related to medical pluralism. RESULTS: Medical pluralism, manifesting across traditional, faith-based and biomedical health-worlds, contributed to the care cascade bottlenecks for PLHIV through three pathways of impact. First, access to HIV treatment was delayed through the nature of health-related beliefs, knowledge and patient journeys. Second, HIV treatment was interrupted by availability of alternative options, perceived failed treatment and exploitation of PLHIV by opportunistic traders and healers. Lastly, the mixing of biomedical healthcare providers and treatment with traditional and faith-based options fuelled tensions driven by fear of drug-to-drug interactions and mistrust between providers operating in different health-worlds. CONCLUSION: Medical pluralism contributes to delays and interruptions of care along the HIV cascade, and mistrust between health providers. Region-wide interventions and policies are urgently needed in sub-Saharan Africa to minimise potential harm and consequences of medical pluralism for PLHIV. The role of sociocultural beliefs in mediating bottlenecks necessitate adoption of culture-sensitive approaches intervention designs and policy reforms appropriate to the context of sub-Saharan Africa