An ethnographic study of the everyday lives of young women living with HIV in Zambia

Although young women in sub-Saharan Africa are disproportionately affected by HIV, limited research has documented their lives with HIV. This thesis aimed to understand the impact of HIV on young women’s everyday lives in Lusaka, Zambia. I conducted a 12-month ethnography with seven middle-income young women living with HIV in 2017-18. Participant observation with the young women, their friends and families was conducted in their homes, recreational spaces, churches, health facilities, colleges and workplaces. Additional data were generated through participatory workshops, diaries and visual collages. The young women had previously participated in a qualitative study in 2014- 15. Data from the latter study were included for secondary analysis. Analyses were inductive, theory-driven and iterative. Methodological critique assessed how collage methods effectively enabled self-reflection among participants in their representations of their lives with HIV. This thesis also prompted critical reflections on ethics-in-practice in conducting research with these participants, and identified areas of ethical tension, including the negotiated researcher-participant relationship and protecting participants’ HIV status. Theoretical findings showed how young women enacted agency through employing strategies to navigate their lives, including secrecy and limiting disclosure. This enabled them to cope with a stigmatising environment and the tight restrictions that were sometimes imposed around disclosure, sexual relationships and treatment adherence. Temporal analyses explored the impact of HIV on the participants’ lives across time, showing how their everyday and biographical experiences were interlinked with the historical availability of ART. My findings provide evidence of these young women’s resilience, offsetting a historical focus on their vulnerability. I propose applying Reynolds Whytes’ term “biogeneration” to capture how young people’s lives are entwined lives to their biosocial-historical environment. I question overly-simplistic narratives urging routine HIV-status disclosure, and endorse support groups for young people living with HIV to provide critical safe spaces to share their experiences with their peers

Remote data collection for public health research in a COVID-19 era: ethical implications, challenges and opportunities.

Physical distancing measures have lead many public health researchers to transition to remote data collection, via mobile phones, online or other virtual platforms. These methods pose a number of challenges related to obtaining informed consent

Navigating 'ethics in practice': An ethnographic case study with young women living with HIV in Zambia

While ‘procedural ethics’ provides essential frameworks for governing global health research, reflecting on ‘ethics in practice’ offers important insights into addressing ethically important moments that arise in everyday research. Particularly for ethnographic research, renowned for it’s fluid and spontaneous nature, engaging with ‘ethics in practice’ has the potential to enhance research practice within global health. We provide a case study for such reflexivity, exploring ‘ethics in practice’ of ethnographic research with middle-income young women living with HIV in Lusaka, Zambia. We explore the ethical issues arising from the layered interaction of the population (young women), the disease under investigation (HIV), the method of study (ethnographic), and the setting (Zambia, a lower middle income country). We describe how we navigated five key practical ethical tensions that arose, namely the psycho-emotional benefits of the research, the negotiated researcher-participant relationship, protecting participants’ HIV status, confidentiality and data ownership, and researcher obligations after the end of the research. We exemplify reflexive engagement with ‘ethics in practice’ and suggest that engaging with ethics in this way can make important contributions towards developing more adequate ethical guidelines and research practice in global public health

The impact of COVID-19 non-pharmaceutical interventions on the lived experiences of people living in Thailand, Malaysia, Italy and the United Kingdom: a cross-country qualitative study

This qualitative study explores the impact of non-pharmaceutical interventions (NPIs), including social distancing, travel restrictions and quarantine, on lived experiences during the first wave of the COVID-19 pandemic in Thailand (TH), Malaysia (MY), Italy (IT) and the United Kingdom (UK). A total of 86 interviews (TH: n = 28; MY: n = 18; IT: n = 20; UK: n = 20) were conducted with members of the public, including healthcare workers (n = 13). Participants across countries held strong views on government imposed NPIs, with many feeling measures lacked clarity. Most participants reported primarily negative impacts of NPIs on their lives, including through separation, isolation and grief over missed milestones; work-related challenges and income loss; and poor mental health and wellbeing. Nonetheless, many also experienced inadvertent positive consequences, including more time at home to focus on what they most valued in life; a greater sense of connectedness; and benefits to working life. Commonly employed coping strategies focused on financial coping (e.g. reducing spending); psycho-emotional coping (e.g. engaging in spiritual practices); social coping and connectedness (e.g., maintaining relationships remotely); reducing and mitigating risks (e.g., changing food shopping routines); and limiting exposure to the news (e.g., checking news only occasionally). Importantly, the extent to which participants' lived experiences were positive or negative, and their ability to cope was underpinned by individual, social and economic factors, with the analysis indicating some salient differences across countries and participants. In order to mitigate negative and unequal impacts of NPIs, COVID-19 policies will benefit from paying closer attention to the social, cultural and psychological-not just biological-vulnerabilities to, and consequences of public health measures

Social, ethical and behavioural aspects of COVID-19

Introduction: Vaccines and drugs for the treatment and prevention of COVID-19 require robust evidence generated from clinical trials before they can be used. Decisions on how to apply non-pharmaceutical interventions such as quarantine, self-isolation, social distancing and travel restrictions should also be based on evidence. There are some experiential and mathematical modelling data for these interventions, but there is a lack of data on the social, ethical and behavioural aspects of these interventions in the literature. Therefore, our study aims to produce evidence to inform (non-pharmaceutical) interventions such as communications, quarantine, self-isolation, social distancing, travel restrictions and other public health measures for the COVID-19 pandemic. Methods: The study will be conducted in the United Kingdom, Italy, Malaysia, Slovenia and Thailand. We propose to conduct 600-1000 quantitative surveys and 25-35 qualitative interviews per country. Data collection will follow the following four themes: (1) Quarantine and self-isolation (2) social distancing and travel restrictions (3) wellbeing and mental health (4) information, misinformation and rumours. In light of limitations of travel and holding in-person meetings, we will primarily use online/remote methods for collecting data. Study participants will be adults who have provided informed consent from different demographic, socio-economic and risk groups. Discussion: At the time of the inception of the study, United Kingdom, Italy, Malaysia, Slovenia and Thailand have initiated strict public health measures and varying degrees of “lockdowns” to curb the pandemic. These public health measures will change in the coming weeks and months depending on the number of cases of COVID-19 in the respective countries. The data generated from our study could inform these strategies in real time