Managing household income and antiretroviral therapy adherence among people living with HIV in a low-income setting: a qualitative data from the HPTN 071 (PopART) trial in South Africa.

BACKGROUND: South Africa is reported to have the highest burden of HIV with an estimated 8.2 million people living with HIV (PLHIV) in 2021- despite adopting the World Health Organisation (WHO) universal HIV test and treat (UTT) recommendations in 2016. As of 2021, only an estimated 67% (5.5 million) of all PLHIV were accessing antiretroviral therapy (ART), as per recorded clinic appointments attendance. Studies in sub-Saharan Africa show that people living in low-income households experience multiple livelihood-related barriers to either accessing or adhering to HIV treatment including lack of resources to attend to facilities and food insecurity. We describe the interactions between managing household income and ART adherence for PLHIV in low-income urban and semi-urban settings in the Western Cape, South Africa. METHODS: We draw on qualitative data collected as part of the HPTN 071 (PopART) HIV prevention trial (2016 - 2018) to provide a detailed description of the interactions between household income and self-reported ART adherence (including accessing ART and the ability to consistently take ART as prescribed) for PLHIV in the Western Cape, South Africa. We included data from 21 PLHIV (10 men and 11 women aged between 18 and 70 years old) from 13 households. As part of the qualitative component, we submitted an amendment to the ethics to recruit and interview community members across age ranges. We purposefully sampled for diversity in terms of age, gender, and household composition. RESULTS: We found that the management of household income interacted with people's experiences of accessing and adhering to ART in diverse ways. Participants reported that ART adherence was not a linear process as it was influenced by income stability, changing household composition, and other financial considerations. Participants reported that they did not have a fixed way of managing income and that subsequently caused inconsistency in their ART adherence. Participants reported that they experienced disruptions in ART access and adherence due to competing household priorities. These included difficulties balancing between accessing care and/or going to work, as well as struggling to cover HIV care-related costs above other basic needs. CONCLUSION: Our analysis explored links between managing household income and ART adherence practices. We showed that these are complex and change over the course of treatment duration. We argued that mitigating negative impacts of income fluctuation and managing complex trade-offs in households be included in ART adherence support programmes

“As a patient I do not belong to the clinic, I belong to the community”: co-developing multi-level, person-centred tuberculosis stigma interventions in Cape Town, South Africa

Background: Anticipated, internal, and enacted stigma are major barriers to tuberculosis (TB) care engagement and directly impact patient well-being. Unfortunately, targeted stigma interventions are lacking. We aimed to co-develop a person-centred stigma intervention with TB-affected community members and health workers in South Africa. Methods: Using a community-based participatory research approach, we conducted ten group discussions with people diagnosed with TB (past or present), caregivers, and health workers (total n = 87) in Khayelitsha, Cape Town. Group discussions were facilitated by TB survivors. Discussion guides explored experiences and drivers of stigma and used human-centred design principles to co-develop solutions. Recordings were transcribed, coded, thematically analysed, and then further interpreted using the socio-ecological model and behaviour change wheel framework. Results: Intervention components across socio-ecological levels shared common functions linked to effective behaviour change, namely education, training, enablement, persuasion, modelling, and environmental restructuring. At the individual level, participants recommended counselling to improve TB knowledge and provide ongoing support. TB survivors can guide messaging to nurture stigma resilience by highlighting that TB can affect anyone and is curable, and provide lived experiences of TB to decrease internal and anticipated stigma. At the interpersonal level, support clubs and family-centred counselling were suggested to dispel TB-related myths and foster support. At the institutional level, health worker stigma reduction training informed by TB survivor perspectives was recommended to decrease enacted stigma. Participants discussed how integration of TB/HIV care services may exacerbate TB/HIV intersectional stigma and ideas for restructured service delivery models were suggested. At the community level, participants recommended awareness-raising events led by TB survivors, including TB information in school curricula. At the policy level, solutions focused on reducing the visibility generated by a TB diagnosis and resultant stigma in health facilities and shifting tasks to community health workers. Conclusions: Decreasing TB stigma requires a multi-level approach. Co-developing a person-centred intervention with affected communities is feasible and generates stigma intervention components that are directed and implementable. Such community-led multi-level intervention components should be prioritised by TB programs, including integrated TB/HIV care services

Exploring how the management of household incomes impact on antiretroviral therapy adherence behaviour of people living with HIV in the Western Cape, South Africa

Thesis (MPhil)--Stellenbosch University, 2021.ENGLISH ABSTRACT: The Human Immunodeficiency Virus (HIV) epidemic presents a global health crisis, with approximately 38 million people worldwide living with HIV (PLHIV) in 2019. Amongst them, an estimated 7.8 million PLHIV live in South Africa. In 2016, the South African government increased access to HIV testing and treatment following the proposed ‘universal test and treat’ strategy advocated by the World Health Organisation (WHO). However, there remains a significant treatment gap as only 4.8 million PLHIV are estimated to be receiving antiretroviral therapy (ART) in the country, and many of those on ART are experiencing challenges in adhering to treatment. Several studies have found that factors surrounding household income are contributing to these challenges. In this study, I explored how the management of household incomes impact the ART adherence behaviour of PLHIV from 13 families affected by HIV in the Western Cape of South Africa. I have drawn findings from the data collected as part of the HPTN 071 (PopART) trial, where in intervention communities, HIV care was delivered at a household level and HIV treatment was made available to all PLHIV prior to changes in the national HIV guidelines. I used Bronfenbrenner’s ecological framework, which entails characterising social life in five levels including the microsystem, mesosystem, exosystem, macrosystem, and chronosystem to interpret the results. Using a thematic approach to organise and analyse data, I first described how families ‘got by’ including social grants and social support; informal borrowing and loans; employment; and independent survival strategies. I found that families managed their procured incomes differently depending on varying household priorities. I found that there is fluidity on the ART adherence behaviours of PLHIV. People could iteratively move from being reluctant, to being adherent and interrupt treatment due to life changes. In the study, I found that factors in the immediate environment (micro-level), including competing household priorities, lack of resources, and recreational activities, have the strongest influence on ART adherence behaviours of PLHIV. I found that households have the potential to create a positive health-enabling environment for PLHIV through adjusting their expenditure patterns in a manner that facilitates optimal adherence to care. However, there were various determinants surrounding ART adherence that operated beyond the influences located at the household level. I propose that future health interventions should be increasingly tailored for household-specific needs, but should also be wary of neglecting factors associated with ART adherence existing beyond the household level.AFRIKAANSE OPSOMMING: Die Menslike Immuniteitsgebreksvirus (MIV)-epidemie skep 'n wêreldwye gesondheidskrisis, met ongeveer 38 miljoen mense wereldwyd wat met MIV leef (PLHIV) in 2019. Na beraming woon 7,8 miljoen mense wat met MIV leef in Suid-Afrika. In 2016 het die Suid-Afrikaanse regering toegang tot MIV-toetsing en behandeling verbreed na aanleiding van die voorgestelde strategie vir 'universele toets en behandeling' wat deur die Wereldgesondheidsorganisasie (WGO) voorgestaan word. Daar is egter 'n beduidende behandelingsgaping, aangesien slegs 4,8 miljoen PLHIV na verwagting antiretrovirale terapie (ART) in die land ontvang, en baie van diegene op ART ervaar uitdagings om behandelings riglyne na te kom. Verskeie studies het bevind dat faktore rondom huishoudelike inkomste tot hierdie uitdagings bydra. In hierdie studie ondersoek ek hoe die bestuur van huishoudelike inkomste die ART-nakomingsgedrag beïnvloed van PLHIV uit 13 gesinne wat deur MIV in die Wes-Kaap van Suid-Afrika geraak word. My bevindinge is gebaseer op data wat versamel is as deel van die HPTN 071 (PopART) -proef, waar MIV-sorg op huishoudelike vlak gelewer is in intervensiegemeenskappe en MIV-behandeling aan alle PLHIV beskikbaar gestel is voordat die nasionale MIV-riglyne verander is. Ek het die ekologiese raamwerk van Bronfenbrenner gebruik om my resultate te interpreteer. Volgens hierdie raamwerk word sosiale lewe op vyf vlakke beskryf insluitend die mikrosisteem, mesosisteem, eksosisteem, makrostelsel en chronestelsel. Met behulp van 'n tematiese benadering om data te organiseer en te ontleed, het ek eerstens beskryf hoe gesinne 'klaar kom', wat insluit maatskaplike toelaes en maatskaplike ondersteuning, informele lenings, indiensneming, en onafhanklike oorlewingstrategieë. Ek het bevind dat gesinne hul verkrygde inkomste anders bestuur, afhangende van die verskillende huishoudelike prioriteite. Ek het bevind dat daar n ‘vloeibaarheid’ in die ART nakoming is deur PLHIV. Mense beweeg tussen huiwering oor behandeling, tot getrou aan behandeling, tot onderbreekte behandeling, afhangend van lewensveranderinge. In die studie het ek gevind dat faktore in die onmiddellike omgewing (mikrovlak), waaronder kompeterende huishoudelike prioriteite, gebrek aan hulpbronne, en ontspanningsaktiwiteite, die grootste invloed het op PLHIV se nakomingsgedrag aan ART. Ek het bevind dat huishoudings die potensiaal het om 'n gesondheids-omgewing vir PLHIV te skep deur hul uitgawepatrone aan te pas op 'n manier wat optimale nakoming van sorg kan fasiliteer. Daar was egter verskillende faktore rondom ART-nakoming wat buite die invloed van huishoudelike vlak bedryf word. Ek stel voor dat toekomstige gesondheidsintervensies toenemend aangepas moet word vir huishoudingspesifieke behoeftes, maar ook moet waak teen die verwaarlosing van faktore wat verband hou met ART-nakoming wat buite die huishoudelike vlak bestaan.Master