Blog post by Joyce Wamoyi1, Dominic Bukenya2, Robert Ssekubugu3, Alison Wringe4 and Jenny Renju4
- National Institute for Medical Research, Tanzania
- Medical Research Council, Uganda
- Rakai health Sciences Programme, Uganda
- London School of Hygiene and Tropical Medicine, UK
A newly published supplement to Sexually Transmitted Infections on the HIV Bottlenecks study presents the multiple tensions that exist between HIV programmes and the complex social realities that characterize the lives of PLHIV in seven health and demographic surveillance sites (HDSS) across sub Saharan Africa.
The unprecedented roll out of antiretroviral (ART) has led to significant declines in mortality across the region. Recent analyses by The network for Analysing Longitudinal Population data on HIV/AIDS (ALPHA ) across these HDSS indicated a substantial impact of HIV treatment programmes on adult mortality following the expansion of ART, with declines ranging from 58% to 84% . Despite this progress, there remains a substantial deficit in overall life expectancy among adults living with HIV, with their survival between five and ten years less than among uninfected adults . These “excess” deaths among PLHIV are occurring along the HIV care and treatment cascade from diagnosis, through treatment initiation and retention .
Situating our multi-site qualitative study within the HDSS enabled us to include PLHIV with different HIV care and treatment histories, including those who had been diagnosed but not yet initiated care, or those who had disengaged from the HIV care process. Both of these groups are notoriously difficult to include in qualitative studies, partly due to difficulties in recruiting them in the absence of household identifiers and pre-obtained consent to contact them for research purposes. As a result, their voices and stories are often missing. Undertaking a qualitative study across so many settings presents a multitude of challenges, as well as opportunities, not least in relation to the analysis and interpretation of the data (see the supplementary material which details the unique methodologies adopted to achieve our ambitious study aims).
Our dynamic study team included an experienced locally based qualitative researcher in each HDSS supported by a team from the London School of Hygiene and Tropical Medicine and one from the University of Copenhagen, with mentorship occurring within and between sites. Close communication has underpinned our successful generation of our research outputs. Regular emails and skype calls were bolstered by three face to face meetings of the study team; two in London and one in Durban. The study team remain committed to continue the analysis and dissemination of the data to ensure maximum impact amongst the study communities and beyond.
Some of the in-country team leaders were asked to reflect on their experiences of running the study. Dominic Bukenya from Uganda commended our collective ability to recruit participants at every stage of the HIV care cascade across the countries. Specifically recognising the “big achievement” of recruiting the “hard to reach group that has tested and been informed of their HIV positivity but not yet enrolled/linked to HIV care”. Robert Ssekubugu, also from Uganda, furthered this point recognising the challenges in capturing silent transfers whereby “the site database [and clinic records] may show that someone is out of care – however after being traced we discovered that the person is in care somewhere else”. He noted the need for a national or at least regional registration system that could capture these movements. Joyce Wamoyi from the Tanzania spoke about the complexity of drawing out comparisons between study sites in qualitative studies. She stated that “the fact that most to the data was similar across settings in different sub-Saharan African countries tells an interesting story, the main one being the similarities that exist in these settings despite other differences (policies, health infrastructure, etc)”.
The supplement to Sexually Transmitted Infections presents the findings from the Bottlenecks study in which we explore patients’ experience at different stages of HIV care and treatment. It begins with two editorials: the first authored by the Lead Investigators of the study which sets the scene and introduces each of the papers, the second by two guest editors, Kielmann and Cataldo argue that bottlenecks to HIV care and treatment can be situated historically in the context of previous ART roll-out approaches.
In their research article, Wringe and colleagues consider how experiences of PLHIV during their HIV testing encounters in the different HDSS may influence subsequent engagement in HIV care. Bukenya and colleagues focus their research on those PLHIV who, despite knowing their HIV status, have not yet initiated HIV treatment. In trying to understand why this is the case, they unravel a range of persistent barriers pertaining to the affordability, availability and acceptability of HIV services. Renju and colleagues explore the embodied experiences of HIV influence their acceptance of ART.
McLean and colleagues focus in on Option B+ for the prevention of mother-to-child transmission services in Malawi, Tanzania and Uganda. Bonnington and colleagues examine the role of stigma in shaping engagement with HIV services in all of the study sites. Ondenge and colleagues elicit some of the broader contextual factors and dynamics that shape patient-provider interactions in five of the study sites. Moshabela and colleagues then look at the multitude of actors engaged with HIV care, and examine how biomedical HIV services intersect with traditional, complementary and alternative medicine and care in all the sites.
Wamoyi and colleagues draw our attention to the interplay between couple dynamics and HIV care- seeking behaviour in South Africa, Tanzania and Malawi. By way of summarising, Skovdal and colleagues considers the potential of ‘theories of practice’ for studying and understanding these varied engagements with HIV services across all of the participating sites.
- Reniers, G., et al., Data Resource Profile: Network for Analysing Longitudinal Population-based HIV/AIDS data on Africa (ALPHA Network). Int J Epidemiol, 2016. 45(1): p. 83-93.
- Reniers, G., et al., Mortality trends in the era of antiretroviral therapy: evidence from the Network for Analysing Longitudinal Population based HIV/AIDS data on Africa (ALPHA). AIDS, 2014. 28 Suppl 4: p. S533-42.
- Cawley, C., et al., Risk factors for service use and trends in coverage of different HIV testing and counselling models in northwest Tanzania between 2003 and 2010. Trop Med Int Health, 2015. 20(11): p. 1473-1487.
- Slaymaker, E., et al. Scale and distribution of excess deaths among HIV positive adults by diagnosis, care and treatment history in African population based cohorts 2007-2011. in International AIDS Society 2014. Melbourne.