Health risks at work mean risks at home: Spatial aspects of COVID-19 among migrant workers in precarious jobs in England.

During COVID-19 lockdowns in England, 'key workers' including factory workers, carers and cleaners had to continue to travel to workplaces. Those in key worker jobs were often from more marginalised communities, including migrant workers in precarious employment. Recognising space as materially and socially produced, this qualitative study explores migrant workers' experiences of navigating COVID-19 risks at work and its impacts on their home spaces. Migrant workers in precarious employment often described workplace COVID-19 protection measures as inadequate. They experienced work space COVID-19 risks as extending far beyond physical work boundaries. They developed their own protection measures to try to avoid infection and to keep the virus away from family members. Their protection measures included disinfecting uniforms, restricting leisure activities and physically separating themselves from their families. Inadequate workplace COVID-19 protection measures limited workers' ability to reduce risks. In future outbreaks, support for workers in precarious jobs should include free testing, paid sick leave and accommodation to allow for self-isolation to help reduce risks to workers' families. Work environments should not be viewed as discrete risk spaces when planning response measures; responses and risk reduction approaches must also take into account impacts on workers' lives beyond the workplace.

Community-led responses to COVID-19 within Gypsy and Traveller communities in England: A participatory qualitative research study.

Individuals were asked to play an active role in infection control in the COVID-19 pandemic. Yet while government messages emphasised taking responsibility for the public good (e.g. to protect the National Health Service), they appeared to overlook social, economic and political factors affecting the ways that people were able to respond. We co-produced participatory qualitative research with members of Gypsy and Traveller communities in England between October 2021 and February 2022 to explore how they had responded to COVID-19, its containment (test, trace, isolate) and the contextual factors affecting COVID-19 risks and responses within the communities. Gypsies and Travellers reported experiencing poor treatment from health services, police harassment, surveillance, and constrained living conditions. For these communities, claiming the right to health in an emergency required them to rely on community networks and resources. They organised collective actions to contain COVID-19 in the face of this ongoing marginalisation, such as using free government COVID-19 tests to support self-designed protective measures including community-facilitated testing and community-led contact tracing. This helped keep families and others safe while minimising engagement with formal institutions. In future emergencies, communities must be given better material, political and technical support to help them to design and implement effective community-led solutions, particularly where government institutions are untrusted or untrustworthy.

COVID-19 vaccination decisions among Gypsy, Roma, and Traveller communities: A qualitative study moving beyond "vaccine hesitancy".

BACKGROUND: Many people refuse vaccination and it is important to understand why. Here we explore the experiences of individuals from Gypsy, Roma, and Traveller groups in England to understand how and why they decided to take up or to avoid COVID-19 vaccinations. METHODS: We used a participatory, qualitative design, including wide consultations, in-depth interviews with 45 individuals from Gypsy, Roma, and Traveller, communities (32 female, 13 male), dialogue sessions, and observations, in five locations across England between October 2021 and February 2022. FINDINGS: Vaccination decisions overall were affected by distrust of health services and government, which stemmed from prior discrimination and barriers to healthcare which persisted or worsened during the pandemic. We found the situation was not adequately characterised by the standard concept of "vaccine hesitancy". Most participants had received at least one COVID-19 vaccine dose, usually motivated by concerns for their own and others' health. However, many participants felt coerced into vaccination by medical professionals, employers, and government messaging. Some worried about vaccine safety, for example possible impacts on fertility. Their concerns were inadequately addressed or even dismissed by healthcare staff. INTERPRETATION: A standard "vaccine hesitancy" model is of limited use in understanding vaccine uptake in these populations, where authorities and health services have been experienced as untrustworthy in the past (with little improvement during the pandemic). Providing more information may improve vaccine uptake somewhat; however, improved trustworthiness of health services for GRT communities is essential to increase vaccine coverage. FUNDING: This paper reports on independent research commissioned and funded by the National Institute for Health Research (NIHR) Policy Research Programme. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR, the Department of Health and Social Care or its arm's length bodies, and other Government Departments.

Reordering the machinery of participation with young people.

In this article, we reflect on our ongoing work that attempts to redistribute the agenda-setting powers of researchers, research funders and the complex of private and public partnerships in the biomedical sciences. Despite calls for diversification, the current landscape is dominated by a traditional medical habitus that prioritises discovery science. This has moral and political consequences. Simultaneously, we have seen a slow rise in top-down infrastructures of public participation in medical science. While we are critical of the resulting machinery of participation, we believe in its premise that knowledge and expertise are everywhere. In our research project-called Utopia Now!-we have been seeking to involve young people in deciding the future of biomedical research. However, this project is itself premised on a number of our own complicities with the power held by universities and research infrastructures. Here, we explore three preliminary tactics through which we attempt to make these complicities politically productive, taking into account the limitations of working as early career researchers. We find that our mediation between young people and researchers across disciplines is not only integral for re-politicising medical research, but also changes our understanding of knowledge production as a process of reordering, sorting and sharing.

Confronting racism in family planning: a critical ethnography of Roma health mediation.

Roma health mediators are part of a government funded, community-led health intervention. One of the programme's central aims is to improve access to reproductive care for Roma women, often said to be one of the most disadvantaged population groups in Europe. This paper is a critical analysis of mediation in Romania, focusing on how social determinants shape access to family planning and how mediators are employed to address inequalities. It is based on ethnographic observations of mediators at work, as well as in-depth interviews with community members, health professionals, and mediators. Health professionals tended to see Roma families as wanting and having an unreasonably large number of children and tried to curtail this through the promotion of contraception. This contrasted with the perspective of community members, who appeared not to choose having many children but who instead struggled to access contraception for financial reasons. Roma health mediators generally seemed aware of multiple and intersecting pressures that women were facing, but ultimately tended to frame family planning as a matter of choice, culture, and knowledge. I set these perspectives against the background of anti-Roma racism and eugenic sentiments, reflected in popular discourses about Roma reproduction. I explore how an intervention that nominally aims to promote the emancipation of Roma communities, in fact entrenches some of the racially fused assumptions that are connected to inequalities of access to reproductive health care in the first place. The discussion has implications for Roma reproductive health interventions across Europe, and for participatory interventions more globally.

An examination of unmet health needs as perceived by Roma in Central and Eastern Europe.

BACKGROUND: Roma comprise the largest ethnic minority in Europe, with an estimated population of 10-12 million. Roughly 50-60% of European Roma live in the countries of Central and Eastern Europe. In this study, we set out to quantify and explain disparities in unmet health needs for Roma populations relative to non-Roma populations, using self-reported access to health care. METHODS: The United Nations Development Programme/World Bank/European Commission 2011 regional Roma survey was used for this study (12 countries, 8735 Roma and 4572 non-Roma living in same communities), with self-reported unmet health need (did not consult a doctor or health professional when they felt it was necessary in past year) as the primary outcome. Multivariable logistic regressions were performed to study the determinants of unmet health need for Roma populations relative to non-Roma populations. Covariates controlled for included sociodemographic characteristics, economic ability, health status and healthcare access. RESULTS: We found in unadjusted models that Roma throughout Central and Eastern Europe, with the exception of Montenegro, are two to three times more likely to report having an unmet health need in the past 12 months than non-Roma living nearby. These disparities largely remain significant, even after adjusting for gender, age, marital status, employment status, education, number of chronic conditions, health insurance status and geographical proximity to medical providers. CONCLUSIONS: Controlling for conventional measures of access to medical care (i.e. geographic access to providers and health insurance) does not eliminate observed disparities in unmet need. Although improving funding and routine access to healthcare services for Roma is important in its own right as a means of increasing inclusion, there is a need for detailed assessments of the barriers that exist in each country, within and outside the health system, coupled with measures to implement existing commitments on Roma rights.

Understanding the modifiable health systems barriers to hypertension management in Malaysia: a multi-method health systems appraisal approach.

BACKGROUND: The growing burden of non-communicable diseases in middle-income countries demands models of care that are appropriate to local contexts and acceptable to patients in order to be effective. We describe a multi-method health system appraisal to inform the design of an intervention that will be used in a cluster randomized controlled trial to improve hypertension control in Malaysia. METHODS: A health systems appraisal was undertaken in the capital, Kuala Lumpur, and poorer-resourced rural sites in Peninsular Malaysia and Sabah. Building on two systematic reviews of barriers to hypertension control, a conceptual framework was developed that guided analysis of survey data, documentary review and semi-structured interviews with key informants, health professionals and patients. The analysis followed the patients as they move through the health system, exploring the main modifiable system-level barriers to effective hypertension management, and seeking to explain obstacles to improved access and health outcomes. RESULTS: The study highlighted the need for the proposed intervention to take account of how Malaysian patients seek treatment in both the public and private sectors, and from western and various traditional practitioners, with many patients choosing to seek care across different services. Patients typically choose private care if they can afford to, while others attend heavily subsidised public clinics. Public hypertension clinics are often overwhelmed by numbers of patients attending, so health workers have little time to engage effectively with patients. Treatment adherence is poor, with a widespread belief, stemming from concepts of traditional medicine, that hypertension is a transient disturbance rather than a permanent asymptomatic condition. Drug supplies can be erratic in rural areas. Hypertension awareness and education material are limited, and what exist are poorly developed and ineffective. CONCLUSION: Despite having a relatively well funded health system offering good access to care, Malaysia's health system still has significant barriers to effective hypertension management. DISCUSSION: The study uncovered major patient-related barriers to the detection and control of hypertension which will have an impact on the design and implementation of any hypertension intervention. Appropriate models of care must take account of the patient modifiable health systems barriers if they are to have any realistic chance of success; these findings are relevant to many countries seeking to effectively control hypertension despite resource constraints.

In search of patient-centred care in middle income countries: the experience of diabetes care in the former Soviet Union.

In this study we apply the principles of patient-centred care to assess how health systems in middle income countries shape the experiences of patients with a common chronic disease and their care providers. We conducted semi-structured interviews with patients with diabetes, health professionals and key informants. We selected interviewees by purposive and snowball sampling. In total 340 respondents were interviewed in five countries: Armenia, Belarus, Moldova, Russia and Ukraine. Data were analysed according to a coding framework that was developed by three researchers, who then uncovered salient themes, similarities and differences between the five countries. Access to and consistent use of services was hampered by the lack of coordination and the financial weaknesses in the health systems. In many cases, lack of external support for individual patients left friends and family as the main providers of support. Patients were not expected to have a say or challenge the decisions concerning their treatment. Our study suggests the need for a radically different way of delivering care for people with diabetes and, by extension, other chronic diseases. Reforms should focus on improving self-management, the coordination of care, involving patients in decisions about their care, and providing emotional and practical support for patients.

An examination of Roma health insurance status in Central and Eastern Europe.

BACKGROUND: Roma in Central and Eastern Europe (CEE) face problems in accessing health care, and a lack of access to statutory health insurance schemes is a key factor. This study seeks to quantify differences in health insurance coverage between Roma and non-Roma and assess whether variations can be explained by socio-economic factors. METHODS: Secondary household survey data collected in 12 CEE countries in 2011 were analysed. A univariate analysis assessed the effect of Roma status on insurance coverage by country. Multivariate analyses were used to progressively adjust for socio-demographic factors, employment status and income. Country-specific literature was drawn on to examine the context of the findings. RESULTS: Lack of insurance coverage for Roma populations varied considerably between countries, from 2.8% without insurance in Slovakia to 67.7% in Albania. Roma were significantly less likely to have health insurance than non-Roma in all countries except Slovakia and Serbia. The greatest differences in Roma and non-Roma insurance coverage were in Montenegro, Bosnia and Herzegovina, Croatia, Bulgaria and Romania. When adjusting for employment status and income, the gap between Roma and non-Roma remained significant in Montenegro, Croatia, Bosnia and Herzegovina, Bulgaria, Romania and Moldova. CONCLUSION: Roma are significantly less likely to have insurance coverage in most CEE countries, and this gap remains when adjusting for socio-economic differences between Roma and non-Roma in many countries. Much needs to be done to address the known barriers that Roma face in accessing insurance coverage, such as tackling problems related to documentation and the receipt of social benefits.

Evidence and ideology as a rationale for light-therapy in Russia: from the Soviet Union to the present day.

Light therapy is still used to treat a number of common diseases in Russia. The practice is firmly anchored in history: Soviet clinical practice was divorced from the emerging field of evidence-based medicine. Medical researchers were cut off from international medical research and scientific literature, with much Soviet scientific activity based on a particular socialist ideology. In this study, the use of light therapy serves as a case study to explore tensions between international evidence-based medicine and practices developed in isolation under the Soviet Union, the legacy of which is to the detriment of many patients today. We used four different search methods to uncover scientific and grey literature, both historical and contemporary. We assessed the changing frequency of publications over time and contrasted the volume of literature on light therapy with more orthodox treatments such as statins and painkillers. Our search found an increasing number and comparatively large body of scientific publications on light therapy in the Russian language, and many publications emanating from prestigious Russian institutions. Combined with our analysis of the historical literature and our appraisal of 22 full text articles, this leads us to suggest that light therapy entered mainstream Soviet medical practice before the Stalinist period and still occupies an important position in contemporary Russian clinical practice. We propose that this outdated treatment survives in Russia in part due to the political, economic and social forces that helped to popularize it during Soviet times, and by the seeming justification offered by poorly executed studies.