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.

'Doing' hypertension: Experiential knowledge and practice in the self-management of 'high blood' in the Philippines.

Patients' embodied experiences do not always correspond to the biomedical concepts of particular diseases. Drawing from year-long fieldwork in the Philippines that involved semi-structured interviews, focus group discussions and digital diaries, we examine how individuals 'do' hypertension through their embodied experiences and the knowledge and practice that emerge from them. Drawing inspiration from Annemarie Mol's work on the notion of 'multiplicity' of disease, our analysis was informed by a commitment to privileging patients' embodied experiences and the multiple ontologies of hypertension. We find that for patients diagnosed with hypertension in the Philippines, symptoms enact illness; patients rely on their own embodied knowledge to define their illness' nature (e.g., diagnosis), experience (e.g., frequency of symptoms and non-chronicity) and praxis (e.g., self-care practices). We show how this knowledge gained from having embodied experiences of living with the disease interacts in various ways with biomedical knowledge, other diagnostic labels and clinical practices, to shape how hypertension manifests and is managed by patients. Beyond interrogating the relationship between what counts as a 'disease' and what is considered a 'symptom', our findings underscore the need to pay attention instead to the mutually co-constitutive processes of embodied experiences and disease categories in co-producing patient knowledge.

Maintaining population health in low- and middle-income countries during the COVID-19 pandemic: Why we should be investing in Community Health Workers.

Community health workers in low- and middle-income country primary health care systems are well suited to perform essential functions on the frontlines of Covid-19 pandemic responses. However, clear and coordinated guidance, updated infection control training, and reliable access to personal protective equipment must be ensured in order to deploy them safely and effectively. With these additional responsibilities, community health workers must also be supported to ensure that hard-fought gains in population health, including progress on non-communicable diseases, are sustained throughout the pandemic.

The co-production of what? Knowledge, values, and social relations in health care.

"Co-production" is becoming an increasingly popular term in policymaking, governance, and research. While the shift from engagement and involvement to co-production in health care holds the promise of revolutionising health services and research, it is not always evident what counts as co-production: what is being produced, under what circumstances, and with what implications for participants. We discuss these questions and propose that co-production can be understood as an exploratory space and a generative process that leads to different, and sometimes unexpected, forms of knowledge, values, and social relations. By opening up this discussion, we hope to stimulate future debates on co-production as well as draw out ways of thinking differently about collaboration and participation in health care and research. Part of the title of this article is inspired by the book "The Social Construction of What?" by Ian Hacking (Cambridge, MA: Harvard University Press; 2000).

Connecting communities to primary care: a qualitative study on the roles, motivations and lived experiences of community health workers in the Philippines.

BACKGROUND: Community health workers (CHWs) are an important cadre of the primary health care (PHC) workforce in many low- and middle-income countries (LMICs). The Philippines was an early adopter of the CHW model for the delivery of PHC, launching the Barangay (village) Health Worker (BHW) programme in the early 1980s, yet little is known about the factors that motivate and sustain BHWs' largely voluntary involvement. This study aims to address this gap by examining the lived experiences and roles of BHWs in urban and rural sites in the Philippines. METHODS: This cross-sectional qualitative study draws on 23 semi-structured interviews held with BHWs from barangays in Valenzuela City (urban) and Quezon province (rural). A mixed inductive/ deductive approach was taken to generate themes, which were interpreted according to a theoretical framework of community mobilisation to understand how characteristics of the social context in which the BHW programme operates act as facilitators or barriers for community members to volunteer as BHWs. RESULTS: Interviewees identified a range of motivating factors to seek and sustain their BHW roles, including a variety of financial and non-financial incentives, gaining technical knowledge and skill, improving the health and wellbeing of community members, and increasing one's social position. Furthermore, ensuring BHWs have adequate support and resources (e.g. allowances, medicine stocks) to execute their duties, and can contribute to decisions on their role in delivering community health services could increase both community participation and the overall impact of the BHW programme. CONCLUSIONS: These findings underscore the importance of the symbolic, material and relational factors that influence community members to participate in CHW programmes. The lessons drawn could help to improve the impact and sustainability of similar programmes in other parts of the Philippines and that are currently being developed or strengthened in other LMICs.

Transitions to adulthood: self-governance and disciplining in the making of patient citizens.

Young people develop new behaviours and redefine their identities during health transitions when they move from paediatric to adult healthcare environments. Their identities help to guide their health-related actions in response to life changes. Young people's health is increasingly recognised as important, yet we lack understanding of how health transitions shape identities and how they relate to other transitions to adulthood. We conducted a longitudinal interview study with young people with sickle cell disease to explore how young people define new identities as they transition to adulthood. We show how 'disciplining at a distance' via healthcare self-management discourses and neoliberal norms governing adolescence play out in the tensions participants encounter when they are crafting new identities. Health transitions involve struggles to negotiate competing demands for self-discipline. It is crucial to create enabling spaces for young people to protect their health while still developing identities that help them achieve life goals.

Not being heard: barriers to high quality unplanned hospital care during young people's transition to adult services - evidence from 'this sickle cell life' research.

BACKGROUND: Young people's experiences of healthcare as they move into adult services can have a major impact on their health, and the transition period for young people with sickle cell disease (SCD) needs improvement. In this study, we explore how young people with SCD experience healthcare during this period of transition. METHODS: We conducted a co-produced longitudinal qualitative study, including 80 interviews in 2016-2017 with young people with SCD aged 13-21 (mean age 16.6) across two cities in England. We recruited 48 participants (30 female, 18 male): 27 interviews were one-off, and 53 were repeated 2-3 times over approximately 18 months. We used an inductive analytical approach, combining elements of Grounded Theory and thematic analysis. RESULTS: Participants reported significant problems with the care they received in A&E during painful episodes, and in hospital wards as inpatients during unplanned healthcare. They experienced delays in being given pain relief and their basic care needs were not always met. Participants said that non-specialist healthcare staff did not seem to know enough about SCD and when they tried to work with staff to improve care, staff often seemed not prepared to listen to them or act on what they said. Participants said they felt out of place in adult wards and uncomfortable with the differences in adult compared with paediatric wards. Because of their experiences, they tried to avoid being admitted to hospital, attempting to manage their painful episodes at home and accessing unplanned hospital care only as a last resort. By contrast, they did not report having problems within SCD specialist services during planned, routine care. CONCLUSIONS: Our study underscores the need for improvements to make services youth-friendly and youth-responsive, including training staff in SCD-specific care, compassionate care and communication skills that will help them elicit and act on young people's voices to ensure they are involved in shaping their own healthcare. If young people are prevented from using transition skills (self-management, self-advocacy), or treated by staff who they worry do not have enough medical competency in their condition, they may well lose their trust in services, potentially compromising their own health.

Developing patient-centred care: an ethnographic study of patient perceptions and influence on quality improvement.

BACKGROUND: Understanding quality improvement from a patient perspective is important for delivering patient-centred care. Yet the ways patients define quality improvement remains unexplored with patients often excluded from improvement work. We examine how patients construct ideas of 'quality improvement' when collaborating with healthcare professionals in improvement work, and how they use these understandings when attempting to improve the quality of their local services. METHODS: We used in-depth interviews with 23 'patient participants' (patients involved in quality improvement work) and observations in several sites in London as part of a four-year ethnographic study of patient and public involvement (PPI) activities run by Collaborations for Leadership in Applied Health Research and Care for Northwest London. We took an iterative, thematic and discursive analytical approach. RESULTS: When patient participants tried to influence quality improvement or discussed different dimensions of quality improvement their accounts and actions frequently started with talk about improvement as dependent on collective action (e.g. multidisciplinary healthcare professionals and the public), but usually quickly shifted away from that towards a neoliberal discourse emphasising the role of individual patients. Neoliberal ideals about individual responsibility were taken up in their accounts moving them away from the idea of state and healthcare providers being held accountable for upholding patients' rights to quality care, and towards the idea of citizens needing to work on self-improvement. Participants portrayed themselves as governed by self-discipline and personal effort in their PPI work, and in doing so provided examples of how neoliberal appeals for self-regulation and self-determination also permeated their own identity positions. CONCLUSIONS: When including patient voices in measuring and defining 'quality', governments and public health practitioners should be aware of how neoliberal rationalities at the heart of policy and services may discourage consumers from claiming rights to quality care by contributing to public unwillingness to challenge the status quo in service provision. If the democratic potential of patient and public involvement initiatives is to be realised, it will be crucial to help citizens to engage critically with how neoliberal rationalities can undermine their abilities to demand quality care.

Spaces for Citizen Involvement in Healthcare: An Ethnographic Study.

This ethnographic study examines how participatory spaces and citizenship are co-constituted in participatory healthcare improvement efforts. We propose a theoretical framework for participatory citizenship in which acts of citizenship in healthcare are understood in terms of the spaces they are in. Participatory spaces consist of material, temporal and social dimensions that constrain citizens' actions. Participants draw on external resources to try to make participatory spaces more productive and collaborative, to connect and expand them. We identify three classes of tactics they use to do this: 'plotting', 'transient combination' and 'interconnecting'. All tactics help participants assemble to a greater or lesser extent a less fragmented participatory landscape with more potential for positive impact on healthcare. Participants' acts of citizenship both shape and are shaped by participatory spaces. To understand participatory citizenship, we should take spatiality into account, and track the ongoing spatial negotiations and productions through which people can improve healthcare.

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.

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.

Communicating and understanding pain: Limitations of pain scales for patients with sickle cell disorder and other painful conditions.

Pain communication in healthcare is challenging. We examine use of pain scales to communicate pain severity via a case study of people with sickle cell disorder (SCD). We show how pain communication involves complex social interactions between patients, healthcare professionals and significant others - none of which are included in pain ratings. Failure to account for relational aspects of pain may cause problems for any patient. For SCD, mutual distrust shapes pain communication, further complicating clinical assessments. Moreover, SCD pain is particularly severe, making ratings hard to interpret compared with ratings from non-SCD patients, potentially exacerbating problems in managing pain relief.

Reimagining authorship guidelines to promote equity in co-produced academic collaborations.

Authorship of academic papers is a currency that can bring career advantages in academia and other industries. How authorship should be decided is not always clear, particularly in co-produced research with non-academic collaborators, for which existing authorship guidelines are largely silent. In this paper, we critically reflect on what constitutes written authorship in the context of co-produced health research. We present examples from our own work to illustrate the argument we make, including publishing a co-authored paper with non-academic partners. We consider questions of what constitutes authorship and how it is mutually understood. We discuss some of the opportunities and limits to participation and how these might translate into academic authorship as a collaborative research output. Finally, we explore the potential of authorship guidelines as a resource for critical reflection on what we mean by co-produced work and how we recognise contributions to global health research. We suggest that authorship guidelines should be adapted to encourage attribution of co-produced research to include non-academic as well as academic collaborators, and we provide a draft guideline for how this might be done.

Strong structuration analysis of patterns of adherence to hypertension medication.

Achieving blood pressure control is among the highest priorities for reducing the burden of cardiovascular diseases globally. Control is poor in the Philippines, especially in socioeconomically marginalised communities. This paper explores long-term adherence to anti-hypertensive medication in these communities, identifying 4 distinct medication adherence patterns. We draw on Strong Structuration Theory to explore motivations of action for those who are consistently adherent, consistently non-adherent, and those who became more or less adherent over time. We employ longitudinal qualitative methods comprising repeat interviews and digital diaries collected over 12 months by 34 participants. Twelve participants were consistently adherent, 9 consistently non-adherent, 9 increasingly adherent, and 4 increasingly non-adherent. For the consistently adherent, positive views about prescribed medication and family support encouraged adherence. Conversely, negative views of medication and lack of family support were notable amongst the consistently non-adherent, along with resistance to accepting a 'sick' label. A shift toward positive views of medication was detected amongst those whose adherence improved, along with worsening health and increased family support. A decrease in financial resources drove some participants to become less adherent, especially if they already held negative views toward medication. This study sheds light on the variety of medication adherence patterns among poor people with hypertension in the Philippines, as well as the complex web of elements influencing their treatment choices. The results point to the potential for measures that address concerns about medicines and increase family support.

(De)constructing 'therapeutic itineraries' of hypertension care: A qualitative study in the Philippines.

Hypertension, a major risk factor for non-communicable diseases, remains poorly controlled in many countries. In the Philippines, it is still one of the leading causes of preventable deaths despite the accessibility and availability of essential technologies and medicine to detect and treat hypertension. This paper characterizes the 'therapeutic itineraries' of people with hypertension from poor communities in rural and urban settings in the Philippines. We employ longitudinal qualitative methodology comprised of repeat interviews and digital diaries using mobile phones from 40 recruited participants in 12 months. Our findings demonstrate that therapeutic itineraries, rather than being organized according to categories that stem from the structure of the health system (i.e., diagnosis, treatment, follow-up, adherence), diverge from clinical pathways. Therapeutic itineraries begin at a stage we label as 'pre-diagnosis' (PD). Following this, itineraries diverge according to two possible entry points into the healthcare system: via incidental diagnosis (ID) whereby participants were diagnosed with hypertension without deliberately seeking care for hypertension-related symptoms and symptom-driven diagnosis (SD) whereby their diagnosis was obtained during a clinical encounter specifically prompted by hypertension-related symptoms. Participants whose itineraries follow the SD route typically oscillated between periods of regular and intermittent medical treatment, while participants who were diagnosed incidentally (ID) typically opted for self-care As we follow our participants' therapeutic itineraries, we explore the confluence of factors informing their care journey, namely, their conceptions of hypertension, their social relationships, as well the choices and trade-offs they make. We conclude with policy implications from our findings, chief of which is our proposition that models of care based on mere access and availability of clinical interventions fail to reflect the complexity of people's lay understanding and their lived experiences of hypertension and are thus ultimately unhelpful in improving its control.

Prevalence, determinants and outcomes of traditional, complementary and alternative medicine use for hypertension among low-income households in Malaysia and the Philippines.

BACKGROUND: Traditional, complementary and alternative medicine (TCAM) is used to treat a broad range of conditions. In low- and middle-income countries (LMICs), TCAM use is particularly common among those with low socio-economic status. To better understand the patterns and impact of TCAM use on the management of non-communicable diseases in these populations, this study examines the prevalence and characteristics of TCAM use for hypertension, its determinants, and its association with hypertension management outcomes and wellbeing among low-income adults in two Southeast Asian countries at different levels of economic and health system development, Malaysia and the Philippines. METHODS: We analysed cross-sectional data from 946 randomly selected adults diagnosed with hypertension from low-income rural and urban communities in Malaysia (n = 495) and the Philippines (n = 451). We compared the prevalence, characteristics and household expenditure on TCAM use between countries and used multi-level, mixed-effects regression to estimate associations between TCAM use and its determinants, and five hypertension management outcomes and wellbeing. RESULTS: The prevalence of TCAM use to manage hypertension was higher in the Philippines than in Malaysia (18.8% vs 8.8%, p < 0.001). Biologically-based modalities, e.g. herbal remedies, were the most common type of TCAM used in both countries, mainly as a complement, rather than an alternative to conventional treatment. Households allocated around 10% of health spending to TCAM in both countries. Belief that TCAM is effective for hypertension was a positive predictor of TCAM use, while belief in conventional medicine was a negative predictor. TCAM use was not strongly associated with current use of medications for hypertension, self-reported medication adherence, blood pressure level and control, or wellbeing in either country. CONCLUSIONS: A small, but significant, proportion of individuals living in low-income communities in Malaysia and the Philippines use TCAM to manage their hypertension, despite a general lack of evidence on efficacy and safety of commonly used TCAM modalities. Recognising that their patients may be using TCAM to manage hypertension will enable health care providers to deliver safer, more patient-centred care.

Working together to co-produce better health: The experience of the Collaboration for Leadership in Applied Health Research and Care for Northwest London.

OBJECTIVES: To improve the provision of health care, academics can be asked to collaborate with clinicians, and clinicians with patients. Generating good evidence on health care practice depends on these collaborations working well. Yet such relationships are not the norm. We examine how social science research and health care improvement practice were linked through a programme designed to broker collaborations between clinicians, academics, and patients to improve health care - the UK National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care for Northwest London. We discuss the successes and challenges of the collaboration and make suggestions on how to develop synergistic relationships that facilitate co-production of social science knowledge and its translation into practice. METHODS: A qualitative approach was used, including ethnographic elements and critical, reflexive dialogue between members of the two collaborating teams. RESULTS: Key challenges and remedies were connected with the risks associated with new ways of working. These risks included differing ideas between collaborators about the purpose, value, and expectations of research, and institutional opposition. Dialogue between collaborators did not mean absence of tensions or clashes. Risk-taking was unpopular - institutions, funders, and partners did not always support it, despite simultaneously demanding 'innovation' in producing research that influenced practice. CONCLUSIONS: Our path was made smoother because we had funding to support the creation of a 'potential space' to experiment with different ways of working. Other factors that can enhance collaboration include a shared commitment to dialogical practice, a recognition of the legitimacy of different partners' knowledge, a long timeframe to identify and resolve problems, the maintenance of an enabling environment for collaboration, a willingness to work iteratively and reflexively, and a shared end goal.

Public and patient involvement in health data governance (DATAGov): protocol of a people-centred, mixed-methods study on data use and sharing for rare diseases care and research.

INTRODUCTION: International policy imperatives for the public and patient involvement in the governance of health data coexist with conflicting cross-border policies on data sharing. This can challenge the planning and implementation of participatory data governance in healthcare services locally. Engaging with local stakeholders and understanding how their needs, values and preferences for governing health data can be articulated with policies made at the supranational level is crucial. This paper describes a protocol for a project that aims to coproduce a people-centred model for involving patients and the public in decision-making processes about the use and sharing of health data for rare diseases care and research. METHODS AND ANALYSIS: This multidisciplinary project draws on an explanatory sequential mixed-methods study. A hospital-based survey with patients, informal carers, health professionals and technical staff recruited at two reference centres for rare diseases in Portugal will be conducted first. The qualitative study will follow consisting of semi-structured interviews and scenario-based workshops with a subsample of the participant groups recruited at baseline. Quantitative data will be analysed using descriptive and inferential statistics. Inductive and deductive approaches will be combined to analyse the qualitative interviews. Data from scenario-based workshops will be iteratively compared using the constant comparison method to identify cross-cutting themes and categories. ETHICS AND DISSEMINATION: The Ethics Committee for Health from the University Hospital Centre São João/Faculty of Medicine of University of Porto approved the study protocol (Ref. 99/19). Research findings will be disseminated at academic conferences and science promotion events, and through public meetings involving patient representatives, practitioners, policy-makers and students, a project website and peer-reviewed journal publications.

Systematic review of frameworks used to conceptualise health pathways of individuals diagnosed with cardiovascular diseases.

The treatment of cardiovascular disease (CVD) is managed inadequately globally. Theoretically informed frameworks have the potential to account for the multiple elements which constitute the CVD patient pathway, and capture their inter-relationships and processes of change. However, a review and critique of such frameworks is currently lacking. This systematic review aims to identify and critically assess frameworks of access to and utilisation of care which capture the pathways of patients diagnosed with one or more CVDs. The specific objectives are to (1) review how existing frameworks have been used and adapted to capture CVD patient pathways and (2) draw on elements of Strong Structuration Theory to critically appraise them, in terms of their ability to capture the dynamics of the patient journey and the factors that influence it. Five bibliographic databases were searched in January 2019. We included qualitative and quantitative studies containing frameworks used to capture the patient pathway of individuals with CVD, encompassing symptoms, diagnosis, treatment and long-term management. Data on patient behaviour and structural factors were interpreted according to elements of Strong Structuration Theory to assess frameworks on their ability to capture a holistic patient journey. The search yielded 15 articles. The majority were quantitative and all focused on management of CVDs, primarily hypertension. Commonly used frameworks included the common-sense self-regulation model, transtheoretical model and theory of planned behaviour. A critique drawing on elements of Strong Structuration Theory revealed these frameworks narrowly focused on patient attributes (patient beliefs/attitudes) and resulting patient action, but neglected external structures that interacted with these to produce particular outcomes, which results in an individualistic and linear view of the patient pathway. We suggest that a framework informed by Strong Structuration Theory is sufficiently flexible to examine the patient pathway, while avoiding a strict linear view facilitated by other frameworks.