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The WHO estimates 58 million people experienced one or more TB disease episodes between 2000 and 2018. These 'former TB patients' are at greater risk of future TB infection and death than TB naïve people. Additionally, former TB patients experience social, psychological, and physiological difficulties after microbiological cure. Drawing on semi-structured interviews collected with 28 people from communities in Zambia (n = 8) and South Africa (n = 2) between October 2018 and March 2019, we describe their perceptions of having two or more TB episodes. Utilising a discursive analytic approach, we interrogated how participants conceptualise their risk of disease recurrence. Despite being surprised by subsequent TB episodes, participants utilised their bodily experiences of TB signs and symptoms alongside their experiential knowledge of health systems processes to procure timely diagnosis and care. Yet, many participants were unable to resume social and economic participation. Experiences of multiple TB episodes and correlating social, economic, and physiological vulnerabilities, challenged participants biomedical understanding of TBs curability. Through notions of dirt and 'staining', participants conceptualise TB as a sinister, malicious presence they are bound to encounter time and again. Health providers should discuss the risk of TB recurrence with patients and promote prevention, early detection, and diagnosis of TB disease. [ABSTRACT FROM AUTHOR]

Young perinatally-infected women living with HIV in Zambia grew up alongside antiretroviral therapy (ART) roll-out and expanding prevention programmes. We used Bonnington's temporal framework to understand how HIV impacted the experiences of these women over time. Data were drawn from two sequential studies with a cohort of young women living with HIV: a qualitative study in 2014–16 and an ethnographic study in 2017–18. Data from workshops, in-depth interviews, participant observation and diaries were analysed thematically, guided by three temporalities within the framework: everyday, biographical and epochal time. In everyday time, repetitive daily treatment-taking reminded young women of their HIV status, affecting relationships and leading to secrecy with ART. In biographical time, past events including HIV disclosure, experiences of illness, and loss shaped present experiences and future aspirations. Lastly, in epochal time, the women's HIV infection and their survival were intimately interlinked with the history of ART availability. The epochal temporal understanding leads us to extend Reynolds Whyte's notion of "biogeneration" to conceptualise these women, whose experiences of living with HIV are enmeshed with their biosocial environment. Support groups for young women living with HIV should help them to process biographical events, as well as supporting their everyday needs. [ABSTRACT FROM AUTHOR]

Purpose: Although relatively unknown within the field of rehabilitation, qualitative longitudinal research is ideal for rehabilitation and disability research that aims to understand health-related challenges over time. We describe the strengths and challenges of longitudinal qualitative research using two concrete examples. Materials and methods: Qualitative longitudinal research often involves in-depth interviews of participants on multiple occasions over time. Analytic approaches are complex, summarizing data both cross-sectionally and longitudinally. We present two detailed analytic approaches used in research with people living with HIV in Zambia and Canada. Results: Our experiences provide three recommendations. First, development of the initial analytic coding framework should include both inductive and deductive approaches. Second, given the large quantity of data generated through longitudinal qualitative research, it is important to proactively develop strategies for data analysis and management. Third, as retention of participants is challenging over time, we recommend the use of a consistent interviewer over the duration of the study to promote a trusting relationship. Conclusions: Longitudinal qualitative research has much to offer researchers and can provide clinicians with insights on the challenges of living with chronic and episodic disability. The flexibility in analytic approaches allows for diverse strategies to best address the rehabilitation and disability research questions and allow for insights into living with disability over time. [ABSTRACT FROM AUTHOR]

HIV is increasingly recognized as a chronic illness which may result in episodic disability related to the effects of the virus, side effects of medication, co-morbidities and consequences of aging. Little is known about the episodic disability experiences of people living long-term with HIV in resource-limited countries, which is best understood by following people over time. This qualitative longitudinal study examined the episodic disability experiences and the applicability of four types of episodic disability among people living with HIV and on anti-retroviral therapy in Zambia. We interviewed 31 men and women living with HIV on 3 occasions at 6-month intervals (total of 93 interviews) examining the processes of change over time. We used disability models to inform the interviews exploring impairments/symptoms, activity limitations and participation restrictions. Longitudinal analyses of transcribed interviews confirmed the applicability of four types over time: stable, increasing disability, decreasing disability and significant fluctuations. Analyses highlighted the extent to which determinants of health contributed to the disability experienced. The use of disability models revealed the importance of environmental and social influences on disability and quality of life. The indicators of the type of episodic disability could be used clinically to help understand the nature and potential triggers of the episodes. [ABSTRACT FROM AUTHOR]

Background: Door-to-door distribution of HIV self-testing kits (HIVST) has the potential to increase uptake of HIV testing services (HTS). However, very few studies have explored the social response to and implications of door-to-door including secondary distribution of HIVST on household relations and the ability of individuals to self-test with or without supervision within households. Methods: A CRT of HIVST distribution was nested within the HPTN 071 (PopART) trial, in four Zambian communities randomised to receive the PopART intervention. The nested HIVST trial aimed to increase knowledge of HIV status at population level. Between February 1 and April 30, 2017, 66 zones (clusters) within these four communities were randomly allocated to either the PopART standard of care door-to-door HTS (33 clusters) or PopART standard of care door-to-door HTS plus oral HIVST (33 clusters). In clusters randomised to HIVST, trained Community HIV care provider (CHiPs) visited households and offered individuals aged ≥ 16 and eligible for an offer of HTS the choice of HIV testing using HIVST or routine door-to-door HTS (finger-prick RDT). To document participants' experiences with HIVST, Interviews (n = 40), observations (n = 22) and group discussions (n = 91) with household members and CHiPs were conducted. Data were coded using Atlas.ti 7 and analysed thematically. Results: The usage and storage of HIVST kits was facilitated by familiarity with and trust in CHiPs, the novelty of HIVST, and demonstrations and supervision provided by CHiPs. Door-to-door distribution of HIVST kits was appreciated for being novel, convenient, private, empowering, autonomous and easy-to-use. Literacy and age influenced accurate usage of HIVST kits. The novelty of using oral fluids to test for HIV raised questions, some anxiety and doubts about the accuracy of HIVST. Although HIVST protected participants from experiencing clinic-based stigma, it did not address self-stigma. Within households, HIVST usually strengthened relationships but, amongst couples, there were a few reports of social harms. Conclusion: Door-to-door distribution of HIVST as a choice for how to HIV test is appreciated at community level and provides an important testing option in the sub-Saharan context. However, it should be accompanied by counselling to manage social harms and by supporting those testing HIV-positive to link to care. [ABSTRACT FROM AUTHOR]

Anti-retroviral treatment (ART) has improved the survival of people living with HIV in Africa. Living with chronic HIV comes with new health and functional challenges and the need to manage ART adherence. The Sepo Study applied disability frameworks to better understand living with chronic HIV while using ART. The study followed 35 people (18 women, 17 men) living with HIV and on ART 6 months or longer in private and public health facilities in Lusaka, Zambia over 18-months (2012–2015). A total of 99 in-depth interviews were conducted. Conventional content analysis and NVIVOv10 were applied to analyse the data. Participants were adhering to ART at the times of the interviews and therefore less likely to report major challenges with adherence. Three main themes emerged from the data related to adherence. Firstly, ART was regarded as "giving life", which underscored adherence. Secondly, all participants described strategies for to managehealth and functional limitations, which they attributed as side-effects or chronicity. Thirdly, participants described experiences of uncertainty, including the efficacy of new regimens, potential loss of functioning, risk of new health problems, and death. Long-term ART managment in Africa needs to integrate rehabilitation approaches to address functional limitations, uncertainties, strengthen and support for adherence. [ABSTRACT FROM AUTHOR]

We describe and reflect on a rapid qualitative survey approach called "Broad Brush Survey" (BBS) used in six community-randomized trials (CRTs)/studies in Zambia and South Africa (2004–2018) to document, compare, classify, and communicate community features systematically for public health and multidisciplinary research ends. BBS is based on a set sequence of participatory qualitative methods and fieldwork carried out prior to a CRT intervention and/or research by social scientists to generate rapid community profiles using four key indicators: physical features, social organization, networks, and community narratives. Profiling makes apparent similarities and differences, enabling comparison across communities and can be facilitated by an ideal model of open-closed systems. Findings have provided practical outputs (e.g., community profiles) and academic opportunities (e.g., community typologies). The BBS approach enables complex social landscapes to be incorporated in CRTs. This method has proven to be useful, adaptable and to have multidisciplinary appeal. [ABSTRACT FROM AUTHOR]

Vaginal microbicides are heralded as a woman's HIV prevention method. This study, conducted in a microbicide clinical trial setting in Zambia, explored how the social construction of masculinity and sexual behaviour influenced the acceptability of vaginal microbicides. The data were generated from 18 In-depth Interviews and 8 Focus Group Discussions. The data were analysed thematically. The study found that hegemonic masculinity influenced the use of vaginal microbicides positively and negatively, in multiple ways including: decision to initiate gel use, autonomous use of the gel, and consistent use of the gel. Men were seen as heads of households and decision-makers who approved their partners' intentions to initiate gel use. Autonomous gel use by women was not supported because it challenged men's dominant position in sexual matters and at a family level. The socially accepted notion that men engaged in multiple sexual relationships also influenced women's decision to use the gel. Sustained gel use depended on the perceived effect of the gel on men's sexual desires, sexual performance, fertility, and sexual behaviour. This study suggests that acceptability of microbicides partially lies within the realm of men, with use constrained and dictated by cultural constructs and practice of masculinity and gender. [ABSTRACT FROM AUTHOR]

This paper explores the accountability relationships that arise between researchers, the community and community representative structures known as Community Advisory Boards (CABs). It draws on ethnographic and case study research that documented the history, recruitment, composition and representativeness of two CABs and their relationships with researchers and communities, carried out in two studies in Zambia between 2010 and 2014. The findings revealed contradictions, nuances and imbalances in actual community participation and representation. In both studies, the general population was not given the opportunity to participate in the election of their CAB representatives, and the elected CAB members themselves were initially told to have little or no direct contact with research participants whom they were supposed to represent (unless researchers dictated otherwise). Owing to the researchers’ monopoly of scientific knowledge, literacy and financial resources, power relations were imbalanced. Further, researchers were quick to ask for and formalise community commitment through the CABs whilst reticent about their own accountability to the community. Yet despite these imbalances and CABs lacking formal authority over researchers, CABs did have subtle powers arising from their wider influence in the community, which they could tap into to either support or resist research. To achieve a more balanced and open accountability between research stakeholders, more genuine participatory processes need to be built and sustained. [ABSTRACT FROM AUTHOR]

Previous research has demonstrated increased comorbidities related to the chronic effects of HIV. Rehabilitation science offers a useful approach for studying chronic illness. This longitudinal qualitative study used a rehabilitation science approach to explore the experiences over time of women and men living with HIV and on antiretroviral therapy (ART) in the high HIV-prevalence setting of Lusaka, Zambia. Thirty-five participants participated in a total of 99 in-depth interviews from 2012 to 2015. The central pattern that emerged across the participants' narratives was the paradoxical experience of profound optimism alongside significant new challenges. Participants' stories of hopefulness in the face of ongoing struggles played out in three interconnected themes: (1) impacts on my body and life; (2) interventions I am grateful to have and new interventions I need; and (3) stigma reduced and created by ART. Results reflected the ups and downs of life with HIV as a chronic illness. Participants, whilst committed to and healthier on ART, typically experienced multiple physical, psychological and sensory impairments that varied in type, severity and trajectory. Participants valued improved relationships enabled by ART, but yearned for support for living long-term with HIV. Frequently participants reflected that their needs were overlooked related to managing side-effects, exercise, family planning and healthy sexuality. ART strengthened acceptance by self and others through improved health and productivity and through becoming a source of support for others. However, being on ART also led to stigma, driven by persistent associations with sickness, death, lack of productivity and uncertainty. This study points to shortcomings in the current focus of HIV care in Zambia and the region, which centres on initiating and adhering to ART. Findings call for evolution of the HIV care continuum to embrace a more holistic and long-term approach to living with HIV as a chronic and episodic condition. [ABSTRACT FROM AUTHOR]

Rationale, aims and objectives: Strong health systems are said to be paramount to achieving effective and equitable health care. The World Health Organization has been advocating for using system-wide approaches such as 'systems thinking' to guide intervention design and evaluation. In this paper we report the system-wide effects of a complex health system intervention in Zambia known as Better Health Outcome through Mentorship and Assessment (BHOMA) that aimed to improve service quality. Methods: We conducted a qualitative study in three target districts. We used a systems thinking conceptual framework to guide the analysis focusing on intended and unintended consequences of the intervention. NVivo version 10 was used for data analysis. Results: The addressed community responded positively to the BHOMA intervention. The indications were that in the short term there was increased demand for services but the health worker capacity was not severely affected. This means that the prediction that service demand would increase with implementation of BHOMA was correct and the workload also increased, but the help of clinic lay supporters meant that some of the work of clinicians was transferred to these lay workers. However, from a systems perspective, unintended consequences also occurred during the implementation of the BHOMA. Conclusions: We applied an innovative approach to evaluate a complex intervention in low-income settings, exploring empirically how systems thinking can be applied in the context of health system strengthening. Although the intervention had some positive outcomes by employing system-wide approaches, we also noted unintended consequences. [ABSTRACT FROM AUTHOR]

Gauging community responses to the WHO 2015 recommendation to provide antiretroviral treatment (ART) to all people living with HIV (PLHIV) is critical. There is limited qualitative evidence on the acceptability of this Universal Test and Treat (UTT) strategy or community understanding of the impact of ART on reducing HIV transmission, promoted as Treatment as Prevention (TasP). This article explores early understanding of UTT and TasP in 21 urban communities in South Africa and Zambia in 2013 before a community randomized trial of combination prevention-HPTN 071 (PopART). It draws on participatory research conducted in each community, which carried out group discussions and interviews with 1202 respondents and 203 structured observations. Participants were largely unfamiliar with the concepts of UTT and TasP. They were concerned about an accompanying de-emphasis on sexual behavior change. Treatment and prevention seemed, at first glance, to be experienced separately. With the exception of the prevention of mother-to-child transmission, prevention seldom came into discussions about ART. This was partly because this science had not yet been explained to many and also because it was not an easy fit. Contemplating the link between treatment and prevention, participants emphasized both PLHIV taking care of themselves through good health and preventing disease progression and the moral responsibility of PLHIV to prevent HIV transmission. To avoid igniting moralizing and blaming when introducing UTT and TasP, we should capitalize on the ''taking care of yourself'' legacy while boosting public responsibility through broad antistigma education and patient empowerment efforts. [ABSTRACT FROM AUTHOR]

Background: Despite the increasingly wider availability of antiretroviral therapy (ART), some people living with HIV (PLHIV) and eligible for treatment have opted to adopt self-care practices thereby risking early AIDS-related mortality. Methods: A qualitative study was conducted in urban Zambia to gain insights into PLHIV self-care practices and experiences and explore the implications for successful delivery of ART care. Between March 2010 and September 2011, in-depth interviews were conducted with PLHIV who had dropped out of treatment (n=25) and those that had opted not to initiate medication (n=37). Data was entered into and managed using Atlas ti, and analysed inductively using latent content analysis. Results: PHIV used therapeutic and physical health maintenance, psychological well-being and healthy lifestyle self-care practices to maintain physical health and mitigate HIV-related symptoms. Herbal remedies, faith healing and self-prescription of antibiotics and other conventional medicines to treat HIV-related ailments were used for therapeutic and physical health maintenance purposes. Psychological well-being self-care practices used were religiosity/spirituality and positive attitudes towards HIV infection. These practices were modulated by close social network relationships with other PLHIV, family members and peers, who acted as sources of emotional, material and financial support. Cessations of sexual relationships, adoption of safe sex to avoid re-infections and uptake of nutritional supplements were the commonly used risk reduction and healthy lifestyle practices respectively. Conclusions: While these self-care practices may promote physical and psychosocial well-being and mitigate AIDS-related symptoms, at least in the short term, they however undermine PLHIV access to ART care thereby putting PLHIV at risk of early AIDS-related mortality. The use of scientifically unproven herbal remedies raises health and safety concerns; faith healing may create fatalism and resignation with death while the reported self-prescription of antibiotics to treat HIV-related infections raises concerns about future development of microbial drug resistance amongst PLHIV. Collectively, these self-care practices undermine efforts to effectively abate the spread and burden of HIV and reduce AIDS-related mortality. Therefore, there is need for sensitization campaigns on the benefits of ART and the risks associated with widespread self-prescription of antibiotics and use of scientifically unproven herbal remedies. [ABSTRACT FROM AUTHOR]

Background: Randomised controlled trials (RCTs) are widely used for establishing evidence of the effectiveness of interventions, yet public health interventions are often complex, posing specific challenges for RCTs. Although there is increasing recognition that qualitative methods can and should be integrated into RCTs, few frameworks and practical guidance highlight which qualitative methods should be integrated and for what purposes. As a result, qualitative methods are often poorly or haphazardly integrated into existing trials, and researchers rely heavily on interviews and focus group discussions. To improve current practice, we propose a framework for innovative qualitative research methods that can help address the challenges of RCTs for complex public health interventions.Methods: We used a stepped approach to develop a practical framework for researchers. This consisted of (1) a systematic review of the innovative qualitative methods mentioned in the health literature, (2) in-depth interviews with 23 academics from different methodological backgrounds working on RCTs of public health interventions in 11 different countries, and (3) a framework development and group consensus-building process.Results: The findings are presented in accordance with the CONSORT (Consolidated Standards of Reporting Trials) Statement categories for ease of use. We identify the main challenges of RCTs for public health interventions alongside each of the CONSORT categories, and potential innovative qualitative methods that overcome each challenge are listed as part of a Framework for the Integration of Innovative Qualitative Methods into RCTs of Complex Health Interventions. Innovative qualitative methods described in the interviews include rapid ethnographic appraisals, document analysis, diary methods, interactive voice responses and short message service, community mapping, spiral walks, pair interviews and visual participatory analysis.Conclusions: The findings of this study point to the usefulness of observational and participatory methods for trials of complex public health interventions, offering a novel contribution to the broader literature about the need for mixed methods approaches. Integrating a diverse toolkit of qualitative methods can enable appropriate adjustments to the intervention or process (or both) of data collection during RCTs, which in turn can create more sustainable and effective interventions. However, such integration will require a cultural shift towards the adoption of method-neutral research approaches, transdisciplinary collaborations, and publishing regimes. [ABSTRACT FROM AUTHOR]