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The hidden burden of medical testing: public views and experiences of COVID-19 testing as a social and ethical process
Background
In May 2020, the Scottish Government launched Test and Protect, a test, trace and isolate programme for COVID-19 that includes a PCR testing component. The programme’s success depended on the willingness of members of the public to seek out testing when they experienced symptoms and to comply with guidelines on isolation should they test positive. Drawing on qualitative interview-based research, this paper analyses public understandings, expectations, and experiences of COVID-19 testing during the early stages of the programme. Through anthropological and sociological analysis of the findings we aim to contribute to social understandings of COVID-19 testing practices; and to inform the design of population level testing programmes for future pandemics.
Methods
Between 7 July and 24 September 2020, 70 semi-structured interviews were conducted with members of the general public (aged 19–85) living in the Lothian region of Scotland. Interviews were held online or by telephone, were transcribed verbatim and analysed using thematic analysis informed by anthropological and sociological theories of medical testing.
Findings
Social relationships and ethical considerations shape testing practices at every stage of the testing process. Members of the public viewed testing as a civic duty to society and moral duty to friends, family, and colleagues. However, the testing process also placed a significant social, economic, and practical burden on the individual and sometimes generated competing obligations. Many participants experienced a disconnect between the government’s portrayal of testing as easy and the everyday burden of testing.
Conclusions
COVID-19 testing is experienced as a social process shaped by multiple relationships and ethical considerations. The full burden of testing should be considered in the design of future testing programmes.
Journal Article
Diagnostic waste: whose responsibility?
Waste management is notably absent from current discussions about efforts to improve access to diagnostics in low-and middle-income Countries (LMICs). Yet an increase in testing will inevitably lead to an increase in diagnostic waste, especially since many of the diagnostic tests designed for use in LMICs are single-use point-of-care tests. Diagnostic waste poses a threat to both human and environmental health. In this commentary we draw on our experience of diagnostic waste management in Sierra Leone and review current evidence on: the volume and impact of diagnostic waste in LMICs, existing health-care waste management capacity in LMICs, established national and international policies for improving health-care waste management, and opportunities for strengthening policy in this area. We argue that questions of safe disposal for diagnostics should not be an afterthought, only posed once questions of access have already been addressed. Moreover, responsibility for safe disposal of diagnostic waste should not fall solely on national health systems by default. Instead, consideration of the end-life of diagnostic products must be fully integrated into the diagnostic access agenda and greater pressure should be placed on manufacturers to take responsibility for the full life-cycle of their products.
Journal Article
Knowledge, Attitudes, and Behavior Related to COVID-19 Testing: A Rapid Scoping Review
Testing programs for COVID-19 depend on the voluntary actions of members of the public for their success. Understanding people’s knowledge, attitudes, and behavior related to COVID-19 testing is, therefore, key to the design of effective testing programs worldwide. This paper reports on the findings of a rapid scoping review to map the extent, characteristics, and scope of social science research on COVID-19 testing and identifies key themes from the literature. Main findings include the discoveries that people are largely accepting of testing technologies and guidelines and that a sense of social solidarity is a key motivator of testing uptake. The main barriers to accessing and undertaking testing include uncertainty about eligibility and how to access tests, difficulty interpreting symptoms, logistical issues including transport to and from test sites and the discomfort of sample extraction, and concerns about the consequences of a positive result. The review found that existing research was limited in depth and scope. More research employing longitudinal and qualitative methods based in under-resourced settings and examining intersections between testing and experiences of social, political, and economic vulnerability is needed. Last, the findings of this review suggest that testing should be understood as a social process that is inseparable from processes of contact tracing and isolation and is embedded in people’s everyday routines, livelihoods and relationships.
Journal Article
Is qualitative social research in global health fulfilling its potential?: a systematic evidence mapping of research on point-of-care testing in low- and middle-income contexts
Background
Qualitative social research has made valuable contributions to understanding technology-based interventions in global health. However, we have little evidence of who is carrying out this research, where, how, for what purpose, or the overall scope of this body of work. To address these questions, we undertook a systematic evidence mapping of one area of technology-focused research in global health, related to the development, deployment and use of point-of-care tests (POCTs) for low-and middle-income countries (LMICs).
Methods
We conducted an exhaustive search to identify papers reporting on primary qualitative studies that explore the development, deployment, and use of POCTs in LMICs and screened results to identify studies meeting the inclusion criteria. Data were extracted from included studies and descriptive analyses were conducted.
Results
One hundred thirty-eight studies met our inclusion criteria, with numbers increasing year by year. Funding of studies was primarily credited to high income country (HIC)-based institutions (95%) and 64% of first authors were affiliated with HIC-based institutions. Study sites, in contrast, were concentrated in a small number of LMICs. Relatively few studies examined social phenomena related to POCTs that take place in HICs. Seventy-one percent of papers reported on studies conducted within the context of a trial or intervention. Eighty percent reported on studies considering POCTs for HIV and/or malaria. Studies overwhelmingly reported on POCT use (91%) within primary-level health facilities (60%) or in hospitals (30%) and explored the perspectives of the health workforce (70%).
Conclusions
A reflexive approach to the role, status, and contribution of qualitative and social science research is crucial to identifying the contributions it can make to the production of global health knowledge and understanding the roles technology can play in achieving global health goals. The body of qualitative social research on POCTs for LMICs is highly concentrated in scope, overwhelmingly focuses on testing in the context of a narrow number of donor-supported initiatives and is driven by HIC resources and expertise. To optimise the full potential of qualitative social research requires the promotion of open and just research ecosystems that broaden the scope of inquiry beyond established public health paradigms and build social science capacity in LMICs.
Journal Article
Situational analysis of pesticide poisoning and perceptions of autoinjector devices in rural communities in Sri Lanka – a study protocol
Intentional and unintentional pesticide poisoning is an important public health problem, especially in low- and middle-income countries. Individuals who have been exposed to toxic pesticides, particularly organophosphorus insecticides, need early treatment. Atropine autoinjector devices offer a potential solution, allowing storage of effective treatment near agricultural workers' fields and homes that could be reached within minutes by the worker or fellow villagers to provide first-line emergency care. Here we present the design of a qualitative, formative study that will constitute the first phase of an implementation science study exploring the introduction of atropine autoinjectors in rural villages.This study will employ a qualitative design to investigate the feasibility and operational opportunities and challenges in providing pre-hospital emergency care with atropine autoinjectors in rural communities in Sri Lanka. We will conduct semi-structured interviews, ethnographic observations, oral history interviews, participatory mapping, and focus group discussions in villages and in hospitals.This study will allow the design of an autoinjector intervention that is tailored to specific needs of rural communities, maximise the potential benefits in the villages where they are placed, and contribute to knowledge related to biomedical technologies designed for use in LMICs. It will also contribute to social science scholarship in the context of pesticide poisoning. Study approvals have been obtained from the University of Edinburgh Medical School Research Ethics Committee (23-EMREC-039) and from Ethics Review Committee, Faculty of Medicine and Allied Sciences, Rajarata University of Sri Lanka (ERC/2023/4).
Journal Article
Invisible and undervalued: A qualitative study of laboratory workers’ experiences and perceptions of laboratory strengthening in Sierra Leone
BackgroundThe 2013–2016 West Africa Ebola outbreak highlighted the importance of laboratory capacity to outbreak response while also revealing its long-standing neglect. The outbreak prompted massive international investment into strengthening laboratory services across multiple healthcare settings.ObjectiveIn this article, we explore hospital-based clinical laboratory workers’ experiences and perceptions of their everyday working environment in Sierra Leone, and how recent investments in laboratory strengthening have shaped these.MethodsThis qualitative study draws on in-depth interviews with eight laboratory workers and participant observation of laboratory practices at a tertiary referral hospital in Freetown between April 2019 and December 2019. Interview and observational data were coded and analysed using a reflexive thematic approach.ResultsThe Ebola outbreak prompted international investments in automated devices, biosafety training, and a new dedicated infectious diseases laboratory. However, little investment was made in the infrastructure and supply systems needed to sustain routine laboratory work or keep machines functioning. Laboratory workers perceived their work to be under-recognised and undervalued by the government, hospital managers and clinical staff, a perception compounded by under-use of the hospital’s laboratory services by clinicians.ConclusionUnderstanding laboratory technicians’ views, experiences, and priorities is essential to any sustainable laboratory-strengthening effort. Investments in personnel should match investments in technologies and infrastructure for outbreak response.What this study addsThis study contributes to an understanding of how clinical laboratory personnel in Sierra Leone view and experience their work, and introduces the concept of social invisibility to explain these experiences.
Journal Article
Anthropology at the bottom of the pyramid
This article explores what anthropology has to say about contemporary business strategies for market expansion among poor consumers in Africa and Asia. Focusing on the activities of global consumer goods company Unilever in India, we show how anthropology can provide valuable insights into the hidden work and power relations involved in transforming an everyday commodity like soap into a composite object, what we call a ‘social good’, that is capable of simultaneously combating disease, tackling poverty and realizing value for shareholders.
Journal Article
Students’ and staffs’ views and experiences of asymptomatic testing on a university campus during the COVID-19 pandemic in Scotland: a mixed methods study
ObjectivesTo explore the acceptability of regular asymptomatic testing for SARS-CoV-2 on a university campus using saliva sampling for PCR analysis and the barriers and facilitators to participation.DesignCross-sectional surveys and qualitative semistructured interviews.SettingEdinburgh, Scotland.ParticipantsUniversity staff and students who had registered for the testing programme (TestEd) and provided at least one sample.Results522 participants completed a pilot survey in April 2021 and 1750 completed the main survey (November 2021). 48 staff and students who consented to be contacted for interview took part in the qualitative research. Participants were positive about their experience with TestEd with 94% describing it as ‘excellent’ or ‘good’. Facilitators to participation included multiple testing sites on campus, ease of providing saliva samples compared with nasopharyngeal swabs, perceived accuracy compared with lateral flow devices (LFDs) and reassurance of test availability while working or studying on campus. Barriers included concerns about privacy while testing, time to and methods of receiving results compared with LFDs and concerns about insufficient uptake in the university community. There was little evidence that the availability of testing on campus changed the behaviour of participants during a period when COVID-19 restrictions were in place.ConclusionsThe provision of free asymptomatic testing for COVID-19 on a university campus was welcomed by participants and the use of saliva-based PCR testing was regarded as more comfortable and accurate than LFDs. Convenience is a key facilitator of participation in regular asymptomatic testing programmes. Availability of testing did not appear to undermine engagement with public health guidelines.
Journal Article
Artefacts of not-knowing: The medical record, the diagnosis and the production of uncertainty in Papua New Guinean biomedicine
Anthropological and STS scholars of biomedical work have traditionally explored contexts where inconsistencies and lacunas in diagnostic knowledge-production are problematic for medical practitioners, and such scholars have consequently focused on the social and political processes by which such epistemic uncertainties are resolved. This article draws on ethnographic material from a Papua New Guinean hospital where diagnostic uncertainty is not rendered problematic and where the open-endedness of the diagnostic process gives rise to new forms of medical expertise and practice. The paper focuses on the medical record as an artefact of not-knowing that both documents and performs uncertainty as a valuable resource. It shows that medical records can operate as either technologies of 'opening' that multiply opportunities for pragmatic action within a hospital space or as technologies of 'closure' that move people and documents between spaces. Practices of not-knowing and knowing are therefore shown to be interdependent and interchangeable 'moments' of bureaucratic-biomedical work.
Journal Article