Jenny Renju

Effectiveness of prevention of mother-to-child HIV transmission programmes in Kilimanjaro region, northern Tanzania.

To monitor the effectiveness of the prevention of mother‐to‐child transmission (PMTCT) components in reducing mother‐to‐child transmission of HIV in Kilimanjaro region, Tanzania.

Changing forms of HIV-related stigma along the HIV care and treatment continuum in sub-Saharan Africa: a temporal analysis

Objectives Stigma remains pervasive for people living with HIV (PLHIV) in sub-Saharan Africa, undermining care engagement. Using everyday, biographical and epochal temporalities, we explored the manifestation of stigma at different stages of the HIV care continuum in seven health and demographic surveillance sites in Eastern and Southern Africa. Methods Between 2015 and 2016, we conducted qualitative in-depth interviews with 264 PLHIV, 54 health providers and 48 family members of people who had died from HIV. Topic guides explored experiences of HIV testing, care and treatment services. Data were analysed thematically, aided by NVivo 10. Results In everyday time across these communities, stigma was evident in the presence of gossiping and the relative absence of supportive interpersonal discourse, which fuelled judicious disclosure. This was especially disruptive at testing, counselling and early antiretroviral therapy adherence stages of care. Biographical time framed everyday stigma events, highlighting the dilemma of disclosure in relation to sexual relationship norms, as well as the interfacing of age and healthcare continuum points. Epochal patriarchal relations gave a structural context to everyday and biographical stigma dynamics. Historical shifts to social acceptance of PLHIV within these communities, while positive, were complicated by stigma in everyday life and in respect of biographical goals like having a family. Moreover, low community-level resistance to HIV-related stigma jeopardised stigma reduction strategies. Conclusions Despite improvements to HIV care services, stigma remains pervasive across the HIV care continuum in these sites. Context-specific interventions are needed to address stigma and discrimination of PLHIV within the community and in health services, and greater reflection is required to ensure policies aiming to expand HIV treatment do not exacerbate stigma and result in negative HIV outcomes.

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.

Understanding the relationship between couple dynamics and engagement with HIV care services: insights from a qualitative study in Eastern and Southern Africa.

Objective To explore the interplay between couple dynamics and the engagement of people living with HIV (PLHIV) with HIV care and treatment services in three health and demographic surveillance sites in Tanzania, Malawi and South Africa. Methods A qualitative study was conducted involving 107 in-depth interviews with PLHIV with a range of HIV care and treatment histories, including current users of HIV clinics, and people not enrolled in HIV care. Interviews explored experiences of living with HIV and how and why they chose to engage or not with HIV services. Thematic analysis was conducted with the aid of NVivo 10. Results We found an interplay between couple dynamics and HIV care and treatment-seeking behaviour in Tanzania, Malawi and South Africa. Being in a relationship impacted on the level and type of engagement with HIV services in multiple ways. In some instances, couples living with HIV supported each other which improved their engagement with care and strengthened their relationships. The desire to fulfil societal expectations and attract a new partner, or have a baby with a new partner, or to receive emotional or financial support, strengthened on-going engagement with HIV care and treatment. However, fear of blame, abandonment or abuse resulted in unwillingness to disclose and often led to disputes or discord between couples. There was little evidence of intracouple understanding of each other’s lived experiences with HIV, and we found that couples rarely interacted with the formal health system together. Conclusions Couple dynamics influenced engagement with HIV testing, care and treatment for both partners through a myriad of pathways. Couple-friendly approaches to HIV care and treatment are needed that move beyond individualised care and which recognise partner roles in HIV care engagement.

Using theories of practice to understand HIV-positive persons varied engagement with HIV services: a qualitative study in six Sub-Saharan African countries

Objectives This article considers the potential of ‘theories of practice’ for studying and understanding varied (dis)engagement with HIV care and treatment services and begins to unpack the assemblage of elements and practices that shape the nature and duration of individuals’ interactions with HIV services. Methods We obtained data from a multicountry qualitative study that explores the use of HIV care and treatment services, with a focus on examining the social organisation of engagement with care as a practice and as manifested in the lives of people living with HIV in sub-Saharan Africa. The dataset comprised of 356 interviews with participants from six countries. Results We noted fluctuating interactions with HIV services in all countries. In line with theories of practice, we found that such varied engagement can be explained by (1) the availability, absence and connections between requisite ‘materialities’ (eg, health infrastructure, medicines), ‘competencies’ (eg, knowing how to live with HIV) and ‘meanings’ (eg, trust in HIV services, stigma, normalisation of HIV) and (2) a host of other life practices, such as working or parenting. These dynamics either facilitated or inhibited engagement with HIV services and were intrinsically linked to the discursive, cultural, political and economic fabric of the participating countries. Conclusion Practice theory provides HIV researchers and practitioners with a useful vocabulary and analytical tools to understand and steer people’s differentiated HIV service (dis)engagement. Our application of practice theory to engagement in HIV care, as experienced by HIV service users and providers in six sub-Saharan African countries, highlights the need for a practice-based approach in the delivery of differentiated and patient-centred HIV services.

‘I am treated well if I adhere to my HIV medication’: putting patient–provider interactions in context through insights from qualitative research in five sub-Saharan African countries

Objectives The nature of patient–provider interactions and communication is widely documented to significantly impact on patient experiences, treatment adherence and health outcomes. Yet little is known about the broader contextual factors and dynamics that shape patient–provider interactions in high HIV prevalence and limited-resource settings. Drawing on qualitative research from five sub-Saharan African countries, we seek to unpack local dynamics that serve to hinder or facilitate productive patient–provider interactions. Methods This qualitative study, conducted in Kisumu (Kenya), Kisesa (Tanzania), Manicaland (Zimbabwe), Karonga (Malawi) and uMkhanyakude (South Africa), draws upon 278 in-depth interviews with purposively sampled people living with HIV with different diagnosis and treatment histories, 29 family members of people who died due to HIV and 38 HIV healthcare workers. Data were collected using topic guides that explored patient testing and antiretroviral therapy treatment journeys. Thematic analysis was conducted, aided by NVivo V.8.0 software. Results Our analysis revealed an array of inter-related contextual factors and power dynamics shaping patient–provider interactions. These included (1) participants’ perceptions of roles and identities of ‘self’ and ‘other’; (2) conformity or resistance to the ‘rules of HIV service engagement’ and a ‘patient-persona’; (3) the influence of significant others’ views on service provision; and (4) resources in health services. We observed that these four factors/dynamics were located in the wider context of conceptualisations of power, autonomy and structure. Conclusion Patient–provider interaction is complex, multidimensional and deeply embedded in wider social dynamics. Multiple contextual domains shape patient–provider interactions in the context of HIV in sub-Saharan Africa. Interventions to improve patient experiences and treatment adherence through enhanced interactions need to go beyond the existing focus on patient–provider communication strategies.

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.

From policy to practice: exploring the implementation of antiretroviral therapy access and retention policies between 2013 and 2016 in six sub-Saharan African countries

BackgroundUnderstanding the implementation of 2013 World Health Organization (WHO) consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection at the facility level provides important lessons for the roll-out of future HIV policies.MethodsA national policy review was conducted in six sub-Saharan African countries to map the inclusion of the 2013 WHO HIV treatment recommendations. Twenty indicators of policy adoption were selected to measure ART access (n = 12) and retention (n = 8). Two sequential cross-sectional surveys were conducted in facilities between 2013/2015 (round 1) and 2015/2016 (round 2) from ten health and demographic surveillance sites in Kenya, Malawi, South Africa, Tanzania, Uganda and Zimbabwe. Using standardised questionnaires, facility managers were interviewed. Descriptive analyses were used to assess the change in the proportion of facilities that implemented these policy indicators between rounds.ResultsAlthough, expansion of ART access was explicitly stated in all countries’ policies, most lacked policies that enhanced retention. Overall, 145 facilities were included in both rounds. The proportion of facilities that initiated ART at CD4 counts of 500 or less cells/μL increased between round 1 and 2 from 12 to 68%, and facilities initiating patients on 2013 WHO recommended ART regimen increased from 42 to 87%. There were no changes in the proportion of facilities reporting stock-outs of first-line ART in the past year (18 to 11%) nor in the provision of three-month supply of ART (43 to 38%). None of the facilities provided community-based ART delivery.ConclusionThe increase in ART initiation CD4 threshold in most countries, and substantial improvements made in the provision of WHO recommended first-line ART regimens demonstrates that rapid adoption of WHO recommendations is possible. However, improved logistics and resources and/or changes in policy are required to further minimise ART stock-outs and allow lay cadres to dispense ART in the community. Increased efforts are needed to offer longer durations between clinic visits, a strategy purported to improve retention. These changes will be important as countries move to implement the revised 2015 WHO guidelines to initiate all HIV positive people onto ART regardless of their immune status.

'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.

Scaling a waterfall: a meta-ethnography of adolescent progression through the stages of HIV care in sub-Saharan Africa

Introduction: Observational studies have shown considerable attrition among adolescents living with HIV across the “cascade” of HIV care in sub‐Saharan Africa, leading to higher mortality rates compared to HIV‐infected adults or children. We synthesized evidence from qualitative studies on factors that promote or undermine engagement with HIV services among adolescents living with HIV in sub‐Saharan Africa.