The manner in which PLHIV process a positive result can influence their engagement with HIV treatment and care. Thus, there is a need for individually tailored approaches to HTS, including the potential for counselling over multiple sessions if required, supporting status acceptance, and disclosure. This is particularly relevant considering 90-90-90 targets and the need to better support PLHIV to engage with HIV treatment and care following diagnosis.

BackgroundAmbulatory, community-based care for multi-drug resistant tuberculosis (MDR-TB) has been found to be effective in multiple settings with high cure rates. However, little is known about patient preferences around models of MDR-TB care. Médecins Sans Frontières (MSF) has delivered home-based MDR-TB treatment in the rural Kitgum and Lamwo districts of northern Uganda since 2009 in collaboration with the Ministry of Health and the National TB and Leprosy Programme. We conducted a qualitative study examining the experience of patients and key stakeholders of home-based MDR-TB treatment.MethodsWe used semi-structured interviews and focus-group discussions to examine patients’ perceptions, views and experiences of home-based treatment and care for MDR-TB versus their perceptions of care in hospital. We identified how these perceptions interacted with those of their families and other stakeholders involved with TB. Participants were selected purposively following a stakeholder analysis. Sample size was determined by data saturation being reached within each identified homogenous category of respondents: health-care receiving, health-care providing and key informant. Iterative data collection and analysis enabled adaptation of topic guides and testing of emerging themes. The grounded theory method of analysis was applied, with data, codes and categories being continually compared and refined.ResultsSeveral key themes emerged: the perceived preference and acceptability of home-based treatment and care as a model of MDR-TB treatment by patients, family, community members and health-care workers; the fear of transmission of other infections within hospital settings; and the identification of MDR-TB developing through poor adherence to and inadequate treatment regimens for DS-TB.ConclusionsHome-based treatment and care was acceptable to patients, families, communities and health-care workers and was seen as preferable to hospital-based care by most respondents. Home-based care was perceived as safe, conducive to recovery, facilitating psychosocial support and allowing more free time and earning potential for patients and caretakers. These findings could contribute to development of an adaptation of treatment approach strategy at national level.

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BackgroundTreatment for multi-drug resistant tuberculosis (MDR-TB) is lengthy, has severe side effects, and raises adherence challenges. In the Médecins Sans Frontières (MSF) and Ministry of Health (MoH) programme in Karakalpakstan, Uzbekistan, a region with a high burden of MDR-TB, patient loss from treatment (LFT) remains high despite adherence support strategies. While certain factors associated with LFT have been identified, there is limited understanding of why some patients are able to adhere to treatment while others are not. We conducted a qualitative study to explore patients’ experiences with MDR-TB treatment, with the aim of providing insight into the barriers and enablers to treatment-taking to inform future strategies of adherence support.MethodsParticipants were purposively selected. Programme data were analysed to enable stratification of patients by adherence category, gender, and age. 52 in-depth interviews were conducted with MDR-TB patients (n = 35) and health practitioners (n = 12; MSF and MoH doctors, nurses, and counsellors), including five follow-up interviews. Interview notes, then transcripts, were analysed using coding to identify emerging patterns and themes. Manual analysis drew upon principles of grounded theory with constant comparison of codes and categories within and between cases to actively seek discrepancies and generate concepts from participant accounts. Ethics approval was received from the MoH of the Republic of Uzbekistan Ethics Committee and MSF Ethics Review Board.ResultsSeveral factors influenced adherence. Hope and high quality knowledge supported adherence; autonomy and control enabled optimal engagement with treatment-taking; and perceptions of the body, self, treatment, and disease influenced drug tolerance. As far as we are aware, the influence of patient autonomy and control on MDR-TB treatment-taking has not previously been described. In particular, the autonomy of married women around treatment-taking was potentially undermined through their societal position as daughter-in-law, compromising their ability to adhere to treatment. Patients’ engagement with and adherence to treatment could be hindered by hierarchical practitioner-patient relationships that displaced authority, ownership, and responsibility from the patient.ConclusionsOur findings reinforce the need for an individualised and holistic approach to adherence support with engagement of patients as active participants in their care who feel ownership and responsibility for their treatment.

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BackgroundIn 2011, Médecins Sans Frontières (MSF) established a blogging project, “TB&Me,” to enable patients with multidrug-resistant tuberculosis (MDR-TB) to share their experiences. By September 2012, 13 MDR-TB patients had blogged, either directly or with assistance, from the UK, Australia, Philippines, Swaziland, Central African Republic, Uganda, South Africa, India, and Armenia. Due to the lack of research on the potential for social media to support MDR-TB treatment and the innovative nature of the blog, we decided to conduct a qualitative study to examine patient and staff experiences. Our aim was to identify potential risks and benefits associated with blogging to enable us to determine whether social media had a role to play in supporting patients with MDR-TB.Methods and FindingsParticipants were identified and selected purposively. TB&Me bloggers, project staff, MSF headquarters staff involved with TB and WHO European Region TB policy advisors were invited to participate in a semi-structured interview. Twenty interviews were conducted (five with bloggers). Data analysis drew upon principles of grounded theory, with constant comparison of data, cases and categories, and attention to deviant cases. We found that the TB&Me blog was associated with identified health benefits, with no reported instances of harm. There were three main findings: blogging was reported as useful for adherence to DR-TB treatment and supportive of the treatment-taking process by all bloggers and project staff; blogging provided support to patients (peer support, shared experience and reduction in isolation); and the blog was perceived as giving patients strength and voice.ConclusionThe TB&Me blog was seen to be associated with positive identified health and emotional benefits. Component 5 of the Stop TB Global Plan highlights the importance of empowering TB patients and communities. Blogging could be a useful tool to help achieve that ambition.

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IntroductionTreat‐all is being implemented in several African settings, in accordance with 2015 World Health Organisation guidelines. The factors known to undermine adherence to antiretroviral therapy (ART) may change in the context of Treat‐all, where people living with HIV (PLHIV) increasingly initiate ART at earlier, asymptomatic stages of disease, soon after diagnosis. This paper aimed to examine the asymptomatic PLHIV's experiences engaging with early ART initiation under the Treat‐all policy, including how they navigate treatment‐taking over the longer term.MethodsA longitudinal qualitative study was conducted within a Médecins Sans Frontières/Ministry of Health Treat‐all pilot in Shiselweni, southern Eswatini. The Treat‐all pilot began in October 2014, adopted into national policy in October 2016. Participants were recruited purposively to include newly diagnosed, clinically asymptomatic PLHIV with a range of treatment‐taking experiences, and healthcare workers (HCW) with various roles. This analysis drew upon a sub‐sample of 17 PLHIV who had been on ART for at least 12 months, with mean 20 months on ART at first interview, and who undertook three interviews each. Additionally, 20 HCWs were interviewed once. Interviews were conducted from August 2016 to September 2017. Data were analysed thematically using coding, drawing upon principles of grounded theory, and aided by Nvivo 11.ResultsIt was important for PLHIV to perceive the need for treatment, and to have evidence of its effectiveness to motivate their treatment‐taking, thereby supporting engagement with care. For some, coming to terms with a HIV diagnosis or re‐interpreting past illnesses as signs of HIV could point to the need for ART to prevent health deterioration and prolong life. However, others doubted the accuracy of an HIV diagnosis and the need for treatment in the absence of symptoms or signs of ill health, with some experimenting with treatment‐taking as a means of seeking evidence of their need for treatment and its effect. Viral load monitoring appeared important in offering a view of the effect of treatment on the level of the virus, thereby motivating continued treatment‐taking.ConclusionsThese findings highlight the importance of PLHIV perceiving need for treatment and having evidence of the difference that ART is making to them for motivating treatment‐taking. Patient support should be adapted to address these concerns, and viral load monitoring made routinely available within Treat‐all care, with communication of suppressed results emphasized to patients.