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.

Human preparedness: Relational infrastructures and medical countermeasures in Sierra Leone.

This paper examines health worker experiences in two areas of post-epidemic preparedness in Sierra Leone - vaccine trials and laboratory strengthening - to reflect on the place of people in current models of epidemic response. Drawing on ethnographic research and interviews with health workers in the aftermath of Ebola, it explores the hopes and expectations that interventions foster for frontline workers in under-resourced health systems, and describes the unseen work involved in sustaining robust response infrastructures. Our analysis focuses on what it means for the people who sustain health systems in an emergency to be 'prepared' for an epidemic. Human preparedness entails more than the presence of a labour force; it involves building and maintaining 'relational infrastructures', often fragile social and moral relationships between health workers, publics, governments, and international organisations. The COVID-19 pandemic has underscored the value of rethinking human resources from an anthropological perspective, and investing in the safety and support of people at the forefront of response. In describing the labour, personal losses, and social risks undertaken by frontline workers for protocols and practicality to meet in an emergency context, we describe the social process of preparedness; that is, the contextual engineering and investment that make response systems work.

Centering Patient Expectations of a Novel Home-Based Oral Drug Treatment among T. b. rhodesiense Human African Trypanosomiasis Patients in Uganda.

The recent approval of fexinidazole for human African trypanosomiasis (HAT) caused by T. b. gambiense enables improved patient management that is pivotal to elimination. Effective in both the early and late stages of the disease, it obviates the need for invasive lumbar punctures which guide therapy, in some patients. Unlike existing injectable treatments requiring systematic hospitalisation, fexinidazole's oral administration will allow many patients to be treated in an outpatient or home-based setting. Drawing on interviews with 25 T. b. rhodesiense HAT patients managed under existing protocols in Uganda where trials of fexinidazole will begin shortly, this article explores patient expectations of the new protocol to help HAT programmes anticipate patient concerns. Alongside frightening symptoms of this life-threatening illness, the pain and anxiety associated with lumbar punctures and intravenous injections of melarsoprol contributed to a perception of HAT as a serious illness requiring expert medical care. While preferring a new protocol that would avoid these uncomfortable procedures, patients' trust in the care they received meant that nearly half were hesitant towards shifting care out of the hospital setting. Clinical observation is an important aspect of existing HAT care for patients. Programmes may need to offer extensive counselling and monitoring support before patients are comfortable accepting care outside of hospitals.

Integrating innovations: a qualitative analysis of referral non-completion among rapid diagnostic test-positive patients in Uganda's human African trypanosomiasis elimination programme.

BACKGROUND: The recent development of rapid diagnostic tests (RDTs) for human African trypanosomiasis (HAT) enables elimination programmes to decentralise serological screening services to frontline health facilities. However, patients must still undertake multiple onwards referral steps to either be confirmed or discounted as cases. Accurate surveillance thus relies not only on the performance of diagnostic technologies but also on referral support structures and patient decisions. This study explored why some RDT-positive suspects failed to complete the diagnostic referral process in West Nile, Uganda. METHODS: Between August 2013 and June 2015, 85% (295/346) people who screened RDT-positive were examined by microscopy at least once; 10 cases were detected. We interviewed 20 RDT-positive suspects who had not completed referral (16 who had not presented for their first microscopy examination, and 4 who had not returned for a second to dismiss them as cases after receiving discordant [RDT-positive, but microscopy-negative results]). Interviews were analysed thematically to examine experiences of each step of the referral process. RESULTS: Poor provider communication about HAT RDT results helped explain non-completion of referrals in our sample. Most patients were unaware they were tested for HAT until receiving results, and some did not know they had screened positive. While HAT testing and treatment is free, anticipated costs for transportation and ancillary health services fees deterred many. Most expected a positive RDT result would lead to HAT treatment. RDT results that failed to provide a definitive diagnosis without further testing led some to question the expertise of health workers. For the four individuals who missed their second examination, complying with repeat referral requests was less attractive when no alternative diagnostic advice or treatment was given. CONCLUSIONS: An RDT-based surveillance strategy that relies on referral through all levels of the health system is inevitably subject to its limitations. In Uganda, a key structural weakness was poor provider communication about the possibility of discordant HAT test results, which is the most common outcome for serological RDT suspects in a HAT elimination programme. Patient misunderstanding of referral rationale risks harming trust in the whole system and should be addressed in elimination programmes.