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.

Understanding the lived experience of pregnancy and birth for survivors of rape and sexual assault.

BACKGROUND: One in five women in the UK are survivors of rape and sexual assault, and four in five women will give birth. This implies that a substantial number of women experience rape and sexual assault before pregnancy. We highlight and explore the voices and lived experiences of survivors during pregnancy and birth, to better understand the relationship between sexual violence, biomedicine, and pregnancy and to inform maternity care practice. METHODS: This qualitative research took an intersectional feminist approach. We conducted in-depth individual interviews in England with fourteen women who self-identified as survivors of rape or sexual assault, and who had experienced pregnancy and birth after the assault. We conducted open line-by-line coding of the interview transcripts, and identified key themes and sub-themes inductively. RESULTS: Three themes help summarise the narratives: control, safety and trauma. Maintaining a sense of control was important to survivors but they often reported objectification by healthcare staff and lack of consent or choice about healthcare decisions. Participants' preferences for giving birth were often motivated by their desire to feel in control and avoid triggering traumatic memories of the sexual assault. Survivors felt safer when they trusted staff. Many participants said it was important for staff to know they were survivors but none were asked about this. Pregnancy and birth experiences were triggering when they mirrored the assault, for instance if the woman was prevented from moving. Many of our participants reported having unmet mental health care needs before, during or after pregnancy. CONCLUSIONS: Survivors of sexual violence have specific maternity care needs. For our participants, these needs were often not met, leading to negative or traumatic experiences of pregnancy and birth. Systemic biases and poor birth experience jeopardise both psychological and physical safety. Funding for maternity and mental health services must be improved, so that they meet minimum staffing and care standards. Maternity services should urgently introduce trauma-informed models of care.

'Bending' against straightening devices: queer lived experiences of sexuality and sexual health in Bangladesh.

BACKGROUND: Despite global data around increased health risks among sexual and gender diverse populations, lived experiences of young lesbian, gay, bisexual, transgender, queer or questioning, and others (LGBTQ+) people are often ignored in mainstream health research. This is particularly evident in countries such as Bangladesh where the rights of sexual minorities are not recognised. This article looks at queer lived experiences of sexuality and sexual health within such a context. We use the phenomenological framework of heteronormative 'straightening devices' - mechanisms working to direct people towards heterosexuality, gender conformity, and procreative marriage - to identify 'invisible' structures upholding normative sexual behaviours and see how young people in Bangladesh navigate these in their everyday lives. METHODS: This article is based on qualitative data collected in Dhaka, Bangladesh over nine months in 2019 as part of the first author's doctoral research. Using thematic analysis, we draw on experiences of normative sexual expectations from biographical in-depth interviews with 14 purposively sampled LGBTQ + individuals aged 18 to 24. RESULTS: Respondents identified heteronormative expectations around gender norms of traditional behaviour and presentation for men and women as well as parental expectations of compulsory heterosexuality through marriage. These straightening devices existed at multiple levels, including individual, interpersonal, community, and societal. The four main themes around straightening devices include marriage norms for women; harassment of feminine-presenting bodies in public spaces; heteronormative healthcare; and consequences of not embodying heteronormativity. CONCLUSION: Our study highlighted young people's everyday experiences of having to 'bend' to - and against - heteronormative straightening devices at home, in public spaces, and within institutions such as healthcare in Bangladesh. The exploration of queer experiences provides new insights into context-specific ways in which sexual and gender diverse people understand themselves. Further research using the framework of straightening devices can help public health professionals to identify more 'barriers' confronted by sexual and gender diverse young people.

Unpacking power dynamics in research and evaluation on social accountability for sexual and reproductive health and rights.

Over the past decade, social accountability for health has coalesced into a distinct field of research and practice. Whether explicitly stated or not, changed power relations are at the heart of what social accountability practitioners seek, particularly in the context of sexual and reproductive health. Yet, evaluations of social accountability programs frequently fail to assess important power dynamics. In this commentary, we argue that we must include an examination of power in research and evaluation of social accountability in sexual and reproductive health, and suggest ways to do this. The authors are part of a community of practice on measuring social accountability and health outcomes. We share key lessons from our efforts to conduct power sensitive research using different approaches and methods.First, participatory research and evaluation approaches create space for program participants to engage actively in evaluations by defining success. Participation is also one of the key elements of feminist evaluation, which centers power relations rooted in gender. Participatory approaches can strengthen 'traditional' health evaluation approaches by ensuring that the changes assessed are meaningful to communities.Fields from outside health offer approaches that help to describe and assess changes in power dynamics. For example, realist evaluation analyses the causal processes, or mechanisms, grounded in the interactions between social, political and other structures and human agency; programs try to influence these structures and/or human agency. Process tracing requires describing the mechanisms underlying change in power dymanics in a very detailed way, promoting insight into how changes in power relationships are related to the broader program.Finally, case aggregation and comparison entail the aggregation of data from multiple cases to refine theories about when and how programs work. Case aggregation can allow for nuanced attention to context while still producing lessons that are applicable to inform programming more broadly.We hope this brief discussion encourages other researchers and evaluators to share experiences of analysing power relations as part of evaluation of social accountability interventions for sexual and reproductive health so that together, we improve methodology in this crucial area.

Evaluating Complex Interventions Using Qualitative Longitudinal Research: A Case Study of Understanding Pathways to Violence Prevention.

Evaluating social change programs requires methods that account for changes in context, implementation, and participant experience. We present a case study of a school-based partner violence prevention program with young people, where we conducted 33 repeat interviews with nine participants during and after an intervention and analyzed participant trajectories. We show how repeat interviews conducted during and after a social change program were useful in helping us understand how the intervention worked by providing rich contextual information, elucidating gradual shifts among participants, and identifying aspects of the intervention that appear to influence change. Long-term effects of social change interventions are very hard to quantify or measure directly. We argue that a qualitative longitudinal approach provides a way to measure subtle changes that can serve as proxies for longer term impacts.

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).

Using qualitative evaluation components to help understand context: case study of a family planning intervention with female community health volunteers (FCHVs) in Nepal.

BACKGROUND: Evaluations of health interventions are increasingly concerned with measuring or accounting for 'context'. How to do this is still subject to debate and testing, and is particularly important in the case of family planning where outcomes will inevitably be influenced by contextual factors as well as any intervention effects. We conducted an evaluation of an intervention where female community health volunteers (FCHVs) in Nepal were trained to provide better interpersonal communication on family planning. We included a context-orientated qualitative component to the evaluation. Here, we discuss the evaluation findings, specifically focusing on what was added by attending to the context. We explore and illustrate important dimensions of context that may also be relevant in future evaluation work. METHODS: The evaluation used a mixed methods approach, with a qualitative component which included in-depth interviews with women of reproductive age, FCHVs, and family planning service providers. We conducted iterative, thematic analysis. RESULTS: The life-history fertility and contraception narratives generated from the in-depth interviews contextualised the intervention, yielding nuanced data on contraceptive choices, needs, and areas for future action. For instance, it highlighted how women generally knew about effective contraceptive methods and were willing to use them: information was not a major barrier. Barriers instead included reports of providers refusing service when women were not in the fifth day of their menstrual cycle when this was unnecessary. Privacy and secrecy were important to some women, and risked being undermined by information sharing between FCHVs and health services. The qualitative component also revealed unanticipated positive effects of our own evaluation strategies: using referral slips seemed to make it easier for women to access contraception. CONCLUSIONS: Life history narratives collected via in-depth interviews helped us understand pathways from intervention to effect from the user point of view without narrowly focusing only on the intervention, highlighting possible areas for action that would otherwise have been missed. By attending to context in a nuanced way in evaluations, we can build a body of evidence that not only informs future interventions within that context, but also builds better knowledge of contextual factors likely to be important elsewhere.

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.

A Population-Based Matched-Sibling Analysis Estimating the Associations Between First Interpregnancy Interval and Birth Outcomes.

The association between a single interpregnancy interval (IPI) and birth outcomes has not yet been explored using matched methods. We modeled the odds of preterm birth, being small for gestational age, and having low birth weight in a second, live-born infant in a cohort of 192,041 sibling pairs born in Western Australia between 1980 and 2010. The association between IPI and birth outcomes was estimated from the interaction between birth order and IPI (with 18-23 months as the reference category), using conditional logistic regression. Matched analysis showed the odds of preterm birth were higher for siblings born following an IPI of <6 months (adjusted interaction odds ratio = 1.22, 95% confidence interval: 1.06, 1.38) compared with those born after an IPI of 18-23 months. There were no significant differences for IPIs of <6 months for other outcomes (small for gestational age or low birth weight). This is the first study to use matched analyses to investigate the association between a single IPI on birth outcomes. IPIs of <6 months were associated with increased odds of preterm birth in second-born infants, although the association is likely smaller than previously estimated by unmatched studies.

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.

Spatial dimensions of telemedicine and abortion access: a qualitative study of women's experiences.

BACKGROUND: Telemedicine may help women comply with onerous legislative requirements for accessing abortion services. In Utah, there are three mandatory steps: a state-mandated information visit, a 72-h waiting period, and finally the abortion procedure itself. We explored women's experiences of using telemedicine for the first step: the information visit. METHODS: We conducted 20 in-depth interviews with women recruited from Planned Parenthood Association of Utah in 2017 and analyzed them using iterative thematic techniques, using a framework based on Massey's conceptualization of space as comprising temporal, material and social dimensions. RESULTS: Temporal, material and social dimensions of women's access to abortion services intertwined to reduce access and cause discomfort and inconvenience among women in our sample. The 72-h waiting period and travel distance were the key temporal and material barriers, while social dimensions included fear of social judgement, religious influence, and negative stereotyping about people who have abortions. Women described traveling long distances alone and risking excessive pain (e.g. denying pain medication in order to drive immediately after the procedure) to try to overcome these barriers. CONCLUSION: Using telemedicine helped patients reduce burdens created by policies requiring attendance at multiple appointments in a state with limited abortion services. Attending to spatial aspects of abortion provision helps identify how these different dimensions of abortion access interact to reduce access and impose undue burdens. Telemedicine can improve privacy, reduce travel expenses, and reduce other burdens for women seeking abortion care.

Correction to: Improving implementation of health promotion interventions for maternal and newborn health.

Following publication of the original article [1], it was noted that the formatting of the authors' manes was inconsistent with that of the other articles in the series.

Factors affecting effective community participation in maternal and newborn health programme planning, implementation and quality of care interventions.

BACKGROUND: Community participation in in health programme planning, implementation and quality improvement was recently recommended in guidelines to improve use of skilled care during pregnancy, childbirth and the postnatal period for women and newborns. How to implement community participation effectively remains unclear. In this article we explore different factors. METHODS: We conducted a secondary analysis, using the Supporting the Use of Research Evidence framework, of effectiveness studies identified through systematic literature reviews of two community participation interventions; quality improvement of maternity care services; and maternal and newborn health programme planning and implementation. RESULTS: Community participation ranged from outreach educational activities to communities being full partners in decision-making. In general, implementation considerations were underreported. Key facilitators of community participation included supportive policy and funding environments where communities see women's health as a collective responsibility; linkages with a functioning health system e.g. via stakeholder committees; intercultural sensitivity; and a focus on interventions to strengthen community capacity to support health. Levels of participation and participatory approaches often changed over the life of programmes as community and health services capacity to interact developed. CONCLUSION: Implementation requires careful consideration of the context: previous experience with participation, who will be involved, gender norms, and the timeframe for implementation. Relevant stakeholders must be actively involved, particularly those often excluded from decision making. Current limited evidence suggests that the vision of community participation as a process and the presence of a focus to strengthen community capacity to participate and to improve health may be a key factor for long term success.

Community participation for transformative action on women's, children's and adolescents' health.

The Global strategy for women's, children's and adolescents' health (2016-2030) recognizes that people have a central role in improving their own health. We propose that community participation, particularly communities working together with health services (co-production in health care), will be central for achieving the objectives of the global strategy. Community participation specifically addresses the third of the key objectives: to transform societies so that women, children and adolescents can realize their rights to the highest attainable standards of health and well-being. In this paper, we examine what this implies in practice. We discuss three interdependent areas for action towards greater participation of the public in health: improving capabilities for individual and group participation; developing and sustaining people-centred health services; and social accountability. We outline challenges for implementation, and provide policy-makers, programme managers and practitioners with illustrative examples of the types of participatory approaches needed in each area to help achieve the health and development goals.

La Stratégie mondiale pour la santé de la femme, de l'enfant et de l'adolescent (2016-2030) reconnaît que les individus jouent un rôle central dans l'amélioration de leur propre santé. Nous pensons que la participation communautaire, et notamment des communautés qui travaillent avec les services de santé (coproduction en matière de soins de santé), sera essentielle pour atteindre les objectifs de la stratégie mondiale. La participation communautaire répond plus particulièrement au troisième objectif clé: transformer les sociétés afin que les femmes, les enfants et les adolescents puissent exercer leur droit de jouir du meilleur état de santé et de bien-être possible. Dans le présent rapport, nous examinons ce que ceci suppose dans la pratique. Nous analysons trois domaines interdépendants dans le cadre d'une action visant une plus grande participation du public en matière de santé: améliorer la capacité de participation des individus et des groupes, développer et assurer la pérennité des services de santé axés sur l'être humain, et favoriser la responsabilisation sociale. Nous donnons par ailleurs un aperçu des difficultés liées à la mise en œuvre et fournissons aux décideurs, aux administrateurs de programmes et aux professionnels de la santé des exemples illustrant les différents types d'approches participatives nécessaires dans chaque domaine pour atteindre les objectifs liés à la santé et au développement.

La Estrategia Mundial para la Salud de la Mujer, el Niño y el Adolescente (2016-2030) reconoce que las personas tienen un papel fundamental a la hora de mejorar su propia salud. Proponemos que la participación comunitaria, concretamente las comunidades que trabajan junto con los servicios sanitarios (coproducción de atención sanitaria), sea fundamental para lograr los objetivos de la estrategia mundial. En particular, la participación comunitaria aborda el tercer objetivo fundamental: transformar las sociedades de modo que las mujeres, los niños y los adolescentes puedan ejercer sus derechos de salud y bienestar en la mayor medida posible. En este artículo se examina lo que esto implica en la práctica. Se debaten tres ámbitos de acción interdependientes que se encaminan hacia una mayor participación del público en la sanidad: mejorar las capacidades para la participación individual y en grupo; desarrollar y mantener servicios sanitarios centrados en las personas; y contabilidad social. Se repasan los desafíos para su implementación, y se ofrece a los responsables políticos, gestores de programas y médicos ejemplos ilustrativos de los tipos de enfoques de participación necesarios en cada ámbito para contribuir a alcanzar los objetivos sanitarios y de desarrollo.

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.

Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study.

BACKGROUND: Although policy discourses frame integrated Electronic Health Records (EHRs) as essential for contemporary healthcare systems, increased information sharing often raises concerns among patients and the public. This paper examines patient and public views about the security and privacy of EHRs used for health provision, research and policy in the UK. METHODS: Sequential mixed methods study with a cross-sectional survey (in 2011) followed by focus group discussions (in 2012-2013). Survey participants (N = 5331) were recruited from primary and secondary care settings in West London (UK). Complete data for 2761 (51.8 %) participants were included in the final analysis for this paper. The survey results were discussed in 13 focus groups with people living with a range of different health conditions, and in 4 mixed focus groups with patients, health professionals and researchers (total N = 120). Qualitative data were analysed thematically. RESULTS: In the survey, 79 % of participants reported that they would worry about the security of their record if this was part of a national EHR system and 71 % thought the National Health Service (NHS) was unable to guarantee EHR safety at the time this work was carried out. Almost half (47 %) responded that EHRs would be less secure compared with the way their health record was held at the time of the survey. Of those who reported being worried about EHR security, many would nevertheless support their development (55 %), while 12 % would not support national EHRs and a sizeable proportion (33 %) were undecided. There were also variations by age, ethnicity and education. In focus group discussions participants weighed up perceived benefits against potential security and privacy threats from wider sharing of information, as well as discussing other perceived risks: commercial exploitation, lack of accountability, data inaccuracies, prejudice and inequalities in health provision. CONCLUSIONS: Patient and public worries about the security risks associated with integrated EHRs highlight the need for intensive public awareness and engagement initiatives, together with the establishment of trustworthy security and privacy mechanisms for health information sharing.

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.