Negotiating un/sanitary citizenship: the reception of UK government COVID-19 public health messaging by racialised people highly exposed to infection.

Governments across the world differently invoked citizen responsibility for responding to the risk of COVID-19 infection. Approaches which focused on changing social practices served to reinforce distinctions between 'sanitary' and 'unsanitary' citizenship. This paper examines citizens' responses to public health policy messaging, exploring as a case study the reception of UK Government messaging about responsible behaviour during the first two years of the COVID-19 pandemic. We examine the public responses to such messaging from narrative interviews with 43 people who became ill with COVID-19. These interviews were with people who identified as members of the minoritised religious and racialised groups, who were most heavily burdened by the impact of COVID-19. Interviewees challenged assumptions that they were 'irresponsible' for having caught COVID-19, and instead directed attention towards the ways in which pandemic guidance was unworkable. Some actively critiqued government messaging, questioning the problematic racialisation of pandemic messaging and challenging individual responsibilisation for the management of the pandemic. Through this analysis we demonstrate the active role of citizens in enacting, and at times resisting, health policy.

"We decided together": a qualitative study about women with HIV navigating infant-feeding decisions with the father of their children.

BACKGROUND: The World Health Organization (WHO) recommends that women with HIV breastfeed for a minimum of one year. In contrast, United Kingdom (UK) guidelines encourage formula feeding, but breastfeeding can be supported under certain circumstances. Infant-feeding decisions often involve personal and social networks. Currently, little research addresses how individuals with HIV in high-income countries navigate infant-feeding decisions with the father of their children. METHODS: Semi-structured remote interviews were conducted with UK-based individuals with a confirmed HIV positive diagnosis who were pregnant or one-year postpartum, and two partners. Using purposive sampling, pregnant and postpartum participants were recruited through HIV NHS clinics and community-based organisations, and where possible, fathers were recruited via them. Data were analysed using thematic analysis and organised using NVivo 12. RESULTS: Of the 36 women interviewed, 28 were postpartum. The majority were of Black African descent (n = 22) and born outside the UK. The key factors in women navigating HIV and infant-feeding discussions with respect to their baby's father were the latter's: (1) awareness of woman's HIV status; (2) relationship with the woman; (3) confidence in infant-feeding decision; (4) support and opinion about woman's infant-feeding intentions. Most women made a joint decision with biological fathers when in a long-term (> one year) relationship with them. Single women tended not to discuss their infant-feeding decision with the father of their child, often for safety reasons. CONCLUSION: Women in ongoing relationships with the father of their child valued their support and opinions regarding infant-feeding. In contrast, single women chose not to involve the father for reasons of privacy and safety. Clinical teams and community-based organisations should support mothers in discussing infant-feeding decisions regardless of relationship status. When appropriate, they should also support discussions with their partners, but remain sensitive to circumstances where this may put women at risk.

Talking about inequities: A comparative analysis of COVID-19 narratives in the UK, US, and Brazil.

Disproportionate mortality and morbidity burdens of the COVID-19 pandemic and coinciding media coverage of public acts of violence perpetrated against people of color in 2020 precipitated reckonings with structural inequities in global, national, and local contexts. This cross-country comparative analysis aims to describe how people voice and make sense race, racism, and privilege in their experiences with COVID-19 infection in the United States, United Kingdom, and Brazil. Anchored by continuous reflection on our individual and collective positionality, we conducted an inductive comparative analysis conceptually situated in intersectionality and critical race theory. Countries used a shared qualitative methodology to collect and analyze 166 narratives of people with experience of COVID-19 infection from 2020 to 2023. We selected 19 cases that illustrate cross-national differences in peoples' acknowledgment and narration of structural privilege and disadvantage in their observations of COVID-19 in their countries and in their personal experiences. People in the US had the most fluency with voicing race directly. In Brazil, while some respondents (especially younger people) demonstrated high racial consciousness, others struggled to identify and talk about racial relationships. In the UK, people voiced racial identifications, though often within white norms of politeness and an accompanying sense of discomfort. The findings overall illustrate moments the interview becomes or does not become a space for voicing social categories and systemic underpinnings of difference in COVID-19 infections and healthcare experiences. We reflect on cross-country differences in historical and contemporary racialized discourse and elaborate on implications of focusing on voicing in qualitative research.

Towards an Integrated Blood Pressure Self-Monitoring SolutIoN for Stroke/TIA in Ireland: a mixed methods feasibility study for the TASMIN5S IRL randomised controlled trial.

BACKGROUND: Optimising Blood Pressure (BP) control is one of the most important modifiable risk factors in preventing subsequent stroke where the risk increases by one-third for every 10 mmHg rise in systolic BP. The aim of this study was to evaluate the feasibility and effects of BP self-monitoring in patients with a previous stroke or TIA in Ireland. METHODS: Patients with a history of stroke or TIA and sub-optimal BP control were identified from practice electronic medical records and invited to take part in the pilot study. Those with systolic BP >130 mmHg were randomised to a self-monitoring or usual care group. Self-monitoring involved monitoring BP twice a day for 3 days within a 7-day period every month, following text message reminders. Patients sent their BP readings by free-text to a digital platform. The monthly average BP was sent to the patient (traffic light system) and to the patient's GP after each monitoring period. Treatment escalation was subsequently agreed by the patient and GP. RESULTS: Of those identified, 47% (32/68) attended for assessment. Of those assessed, 15 were eligible for recruitment and were consented and randomised to the intervention or control group on a 2:1 basis. Of those randomised, 93% (14/15) completed the study with no adverse events. Systolic BP was lower in the intervention group at 12 weeks. CONCLUSIONS: TASMIN5S, an integrated blood pressure self-monitoring intervention in patients with a previous stroke or TIA, is feasible and safe to deliver in primary care. A pre-agreed three step medication titration plan was easily implemented, increased patient involvement in their care, and had no adverse effects.

Black, Asian and minority ethnic women's experiences of maternity services in the UK: A qualitative evidence synthesis.

AIMS: Black, Asian and minority ethnic women are at higher risk of dying during pregnancy, childbirth and postnatally and of experiencing premature birth, stillbirth or neonatal death compared with their White counterparts. Discrimination against women from ethnic minorities is known to negatively impact women's ability to speak up, be heard and their experiences of care. This evidence synthesis analysed Black, Asian and minority ethnic women's experiences of UK maternity services in light of these outcomes. DESIGN: We conducted a systematic review and qualitative evidence synthesis using the method of Thomas and Harden. DATA SOURCES: A comprehensive search in AMED, Cinahl, Embase, Medline, PubMed and PsycINFO, alongside research reports from UK maternity charities, was undertaken from 2000 until May 2021. Eligible studies included qualitative research about antenatal, intrapartum and postnatal care, with ethnic minority women in maternity settings of the UK NHS. REVIEW METHODS: Study quality was graded using the Critical Appraisal Skills Programme tool. RESULTS: Twenty-four studies met the inclusion criteria. Our synthesis highlights how discriminatory practices and communication failures in UK NHS maternity services are failing ethnic minority women. CONCLUSION: This synthesis finds evidence of mistreatment and poor care for ethnic minority women in the UK maternity system that may contribute to the poor outcomes reported by MBRRACE. Woman-centred midwifery care is reported as positive for all women but is often experienced as an exception by ethnic minority women in the technocratic birthing system. IMPACT: Ethnic minority women report positive experiences when in receipt of woman-centred midwifery care. Woman-centred midwifery care is often the exception in the overstretched technocratic UK birthing system. Mistreatment and poor care reported by many ethnic minority women in the UK could inform the inequalities of outcomes identified in the MBRRACE report.

What would it take to meaningfully attend to ethnicity and race in health research? Learning from a trial intervention development study.

The lack of ethnic diversity in health research participation is a multi-dimensional problem. Racism and intersectional disadvantage compel us to use racial and ethnic categories to explore health, but race theorists warn that these can be essentialising and pathologising. Yet, the alternative, the pursuit of colour-blindness, can render the impact of race and ethnicity on health invisible. This paper describes the attempt to recruit an ethnically diverse sample to inform the development of an intervention for stroke patients. The study revealed deep uncertainties and tensions, which we use to re-examine our own positionalities and perspectives. We focus on the experiences of researchers and participants to show how 'usual' research practices are unwittingly exclusionary and promote 'methodological whiteness' (The British Journal of Sociology, 2017, 68, S214). Calls for greater diversity in research are frequently made, yet health research remains tainted by the use of problematic epistemological starting points, rendering participation by minoritised people uneasy. Medical sociologists, especially those engaged in clinical trials, have a vital role to play in recalibrating health research to attend to ethnicity and race. This requires us to reflect on our practices, to recognise where we are complicit in replicating social inequalities and to actively engage with communities to produce more inclusive research.

Health inequalities, ethnic minorities and COVID19: interactive theatre workshop drawing on a qualitative interview study.

BACKGROUND: The COVID19 pandemic revealed and deepened existing inequalities. These were exacerbated by institutional and interpersonal racism and poorly conceived public health messaging. As a result, people from minority ethnic backgrounds in the UK were disproportionately affected. We conducted a creative interdisciplinary session to support interactive reflection and discussion on these inequalities between the actors and the audience, who was comprised of public health scientists and NHS practitioners, to come up with practical ways to address ethnicity-based health inequalities going forward. METHODS: We prepared a 45 min interactive scenario drawing on forum theatre approaches, which are based on the Theatre of the Oppressed: a set of dramatical techniques created by Augusto Boal. To understand what to include the interactive scenario we carried out a workshop built on a narrative interview study with 70 adults who had Covid between March, 2020, and November, 2021. We adopted a maximum variation sampling strategy focusing on people from minority ethnic backgrounds (45 of total sample). Interviews were done remotely and recorded via video or audio. Study participants were invited to tell their story in their own words, alongside semi-structured prompting. After thematic analysis, the research team worked with theatre practitioners from the Performing Medicine company to create scenarios from verbatim interview content. The format allows audience members to watch scenarios and interact directly with actors, giving advice on how to improve the situation. The study was approved by Berkshire Ethics Committee. Informed verbal and written consent were obtained from all participants. FINDINGS: Five themes from analysis explored in the workshop emerged: (1) existing racialised disadvantages that impacted COVID-19 exposure: employment, housing, and caring responsibilities; (2) unequal access to care, welfare, and support; (3) fears about the health-care system regarding quality of care and vaccine safety; (4) perceptions that the media and public health messaging blamed minority ethnic groups for spreading infection; and (5) increases in acts of direct racism. These informed the development of a 45-minute interactive scenario, which will be performed at the 10th UK Public Health Science conference. INTERPRETATION: There is an urgent need to re-evaluate public health messaging and care for people from minority ethnic backgrounds. This theatre workshop will support reflection to refine workshop content for further dissemination. FUNDING: UK Economic and Social Research Council.

Improving access of young adults with experience of homelessness to primary care dental services in the UK: A realist synthesis.

OBJECTIVE: To understand why, how and under what circumstances interventions lead to improved access of young adults with experience of homelessness (YAEH) to primary care dental services in the UK. METHODS: We followed a realist, theory-driven methodology. It involved locating existing theories, searching for evidence, document selection, data extraction/appraisal and evidence synthesis. We searched scientific databases and grey literature sources. We used these data and relevant substantive theories to develop explanations of how, why and under what circumstances interventions lead to desired outcomes. We presented these explanations in the form of context-mechanism-outcome configurations (CMOCs). The CMOCs were incorporated in an overarching programme theory, which was iteratively developed and refined throughout the realist synthesis. RESULTS: We used 106 scientific and 18 grey literature records to synthesize 61 CMOCs. Our revised programme theory highlights the importance of four main considerations: 'preparing a service', 'producing and disseminating information', 'outreach activities' and 'facilitating interactions'. When designing dental programmes for YAEH, we recommend considering the importance of prior service planning (including resourcing of emergency dental care, training staff and incorporating safety measures), creating positive experiences, flexibility, patient-centeredness, being informative and reassuring, creating an enabling environment (including strong communication, building rapport and avoiding negative judgements), having realistic expectations and designing services that empower patients. CONCLUSIONS: Improving dental access of YAEH requires attention to multiple levels. Services can achieve positive outcomes by understanding the complexity of YAEH lives, and creating contextual circumstances that encourage their attendance.

Shifting research culture to address the mismatch between where trials recruit and where populations with the most disease live: a qualitative study.

BACKGROUND: Research participation is beneficial to patients, clinicians and healthcare services. There is currently poor alignment between UK clinical research activity and local prevalence of disease. The National Institute of Health Research is keen to encourage chief investigators (CIs) to base their research activity in areas of high patient need, to support equity, efficiency and capacity building. We explored how CIs choose sites for their trials and suggest ways to encourage them to recruit from areas with the heaviest burden of disease. METHODS: Qualitative, semi-structured telephone interviews with a purposive sample of 30 CIs of ongoing or recently completed multi-centre trials, all of which were funded by the UK National Institute of Health Research. RESULTS: CIs want to deliver world-class trials to time and budget. Approaching newer, less research-active sites appears risky, potentially compromising trial success. CIs fear that funders may close the trial if recruitment (or retention) is low, with potential damage to their research reputation. We consider what might support a shift in CI behaviour. The availability of 'heat maps' showing the disparity between disease prevalence and current research activity will help to inform site selection. Embedded qualitative research during trial set up and early, appropriate patient and public involvement and engagement can provide useful insights for a more nuanced and inclusive approach to recruitment. Public sector funders could request more granularity in recruitment reports and incentivise research activity in areas of greater patient need. Accounts from the few CIs who had 'broken the mould' suggest that nurturing new sites can be very successful in terms of efficient recruitment and retention. CONCLUSION: While improvements in equity and capacity building certainly matter to CIs, most are primarily motivated by their commitment to delivering successful trials. Highlighting the benefits to trial delivery is therefore likely to be the best way to encourage CIs to focus their research activity in areas of greatest need.

Optimizing a digital intervention for managing blood pressure in stroke patients using a diverse sample: Integrating the person-based approach and patient and public involvement.

BACKGROUND: Having a stroke or transient ischaemic attack increases the risk of a subsequent one, especially with high blood pressure (BP). Home-based BP management can be effective at maintaining optimal BP. OBJECTIVE: To describe the optimization of a digital intervention for stroke patients and the value of participant diversity, using the person-based approach (PBA) and integral patient and public involvement (PPI). SETTING AND PARTICIPANTS: Stroke patients recruited from primary care and community settings, and health-care professionals in primary care, in England and Ireland. DESIGN: Three linked qualitative studies conducted iteratively to develop an intervention using the PBA, with integral PPI. INTERVENTION: The BP: Together intervention, adapted from existing BP self-monitoring interventions, is delivered via mobile phone or web interface to support self-monitoring of BP at home. It alerts patients and their clinicians when a change in antihypertensive medication is needed. FINDINGS: Feedback from a diverse range of participants identified potential barriers, which were addressed to improve the intervention accessibility, feasibility and persuasiveness. Easy-to-read materials were developed to improve usability for patients with aphasia and lower literacy. The importance of including family members who support patient care was also highlighted. Feedback messages regarding medication change were refined to ensure usefulness for patients and clinicians. DISCUSSION: Input from PPI alongside qualitative research with a diverse study sample allowed the creation of a simple and equitable BP management intervention for stroke patients. PATIENT INVOLVEMENT: Two PPI co-investigators contributed to design, conduct of study, data interpretation and manuscript preparation; community PPI sessions informed early planning. Study participants were stroke patients and family members.

Experience of primary care for people with HIV: a mixed-method analysis.

BACKGROUND: Advances in treatment have transformed HIV into a long-term condition (LTC), presenting fresh challenges for health services, HIV specialists, and GPs. AIM: To explore the experience of people living with HIV (PLHIV) regarding consulting their GPs. DESIGN & SETTING: A mixed-method analysis using data from two sources: a nationally-representative survey of PLHIV and a qualitative study with London-based PLHIV. METHOD: Univariate logistic regression was used for quantitative data and framework analysis for qualitative data. RESULTS: The survey had 4422 participants; the qualitative study included 52 participants. In both studies, registration with a GP and HIV status disclosure were high. Similar to general population trends, recent GP use was associated with poor self-rated health status, comorbidities, older age, and lower socioeconomic status. Two-thirds reported a good experience with GPs; a lower proportion felt comfortable asking HIV-related questions. Actual or perceived HIV stigma were consistently associated with poor satisfaction. In the interviews, participants with additional LTCs valued sensitive and consistent support from GPs. Some anticipated, and sometimes experienced, problems relating to HIV status, as well as GPs' limited experience and time to manage their complex needs. Sometimes they took their own initiative to facilitate coordination and communication. For PLHIV, a 'good' GP offered continuity and took time to know and accept them without judgment. CONCLUSION: The authors suggest clarification of roles and provision of relevant support to build the confidence of PLHIV in GPs and primary care staff to care for them. As the PLHIV population ages, there is a strong need to develop trusting patient-GP relationships and HIV-friendly GP practices.

The effectiveness of demand creation interventions for voluntary male medical circumcision for HIV prevention in sub-Saharan Africa: a mixed methods systematic review.

INTRODUCTION: UNAIDS has recommended that in 14 countries across sub-Saharan Africa (SSA), 90% of men aged 10 to 29 years should be circumcised by 2021 to help reduce transmission of HIV. To achieve this target demand creation programmes have been widely implemented to increase demand for Voluntary Medical Male Circumcision (VMMC). This review explores the effectiveness of demand creation interventions and factors affecting programme implementation. METHODS: We completed a mixed methods systematic review searching Medline, Embase, Global health, psycINFO and CINAHL databases in August 2018 with no time restrictions. Demand creation interventions conducted in SSA were categorized and quantitative data about VMMC uptake was used to compare relative and absolute effectiveness of interventions. Qualitative data were summarized into themes relevant to the delivery and impact of programmes. RESULTS AND DISCUSSION: Eighteen of the 904 titles were included in the review. Effective interventions were identified in each demand creation category: financial incentives, counselling or education, involvement of influencers and novel information delivery. Of the 11 randomized controlled trials (RCTs), the greatest absolute impact on VMMC prevalence was seen with a complex intervention including VMMC promotion training for religious leaders (compared to control: 23% (95% CI 22.8 to 23.8) absolute increase; odds ratio (OR) 3.2 (1.4 to 7.3)). Financial incentives generally produced the largest relative effects with men up to seven-times more likely to undergo VMMC in the intervention arm compared to control (adjusted OR 7.1 (95% CI 2.4 to 20.8), 7.1% (3.7 to 10.5) absolute increase). Qualitative findings suggest that interventions are more impactful when they are judged appropriate and acceptable by the target population; delivered by people with relevant personal experience; and addressing broader social and cultural influences through partnership with and education of community leaders. CONCLUSIONS: A range of demand creation interventions can increase VMMC uptake. The most acceptable and effective interventions are financial incentives framed as fair compensation (relative effect) and programmes of education or counselling delivered by people who are influential in the community (absolute effect). Future research should include larger studies with longer follow-up and a consistent definition of VMMC uptake.

From activism to secrecy: Contemporary experiences of living with HIV in London in people diagnosed from 1986 to 2014.

BACKGROUND: Successes in biomedicine have transformed HIV from a debilitating and frequently fatal infection to a chronic, manageable condition. OBJECTIVE: To explore how the contemporary metanarrative of HIV as a chronic condition is understood by patients and how it varies depending on when they were diagnosed. DESIGN: Qualitative interviews with 52 people living with HIV who were diagnosed during different phases in the history of the epidemic. SETTING AND PARTICIPANTS: Participants were recruited from two HIV clinics in London to include four "HIV generations": generation 1 were those who had been diagnosed pre-1997 (pre-ART), generation 2 from 1997 to 2005 (complex ART), generation 3 from 2006 to 2012 (simpler ART) and generation 4 diagnosed in the year before the study (2013-2014). RESULTS: Participants in all HIV generations took their medication as prescribed, attended clinic appointments and were well informed about their immunological biomarkers. While the pre-treatment generation had been engaged in community endeavours such as activism, public education and use of support groups, those more recently diagnosed had little experience of collective activities and their HIV was essentially a private matter, separate from their social identity. These strategies worked for some; however, those experiencing clinical or social problems related to HIV or wider issues often relied exclusively on their HIV clinic for wider support. CONCLUSION: The loss of public conversation around HIV, the imperative for patients to take on greater individual responsibility for HIV management and the streamlining of HIV services alongside reductions in ancillary support services may expose some people to suboptimal health outcomes.

Patient perspectives on the HIV continuum of care in London: a qualitative study of people diagnosed between 1986 and 2014.

OBJECTIVES: To describe the experiences of the HIV treatment cascade of diagnosis, engagement with care and initiation of treatment from the perspective of patients; we explored whether this differed according to the year of their diagnosis, for example, whether they had experienced HIV care in the pretreatment era. DESIGN: Qualitative interview study with framework analysis. SETTING: Two large HIV adult outpatient clinics in central London. PARTICIPANTS: 52 HIV-positive individuals, 41 men, 11 women, purposively sampled to include people who had been diagnosed at different stages in the history of the epidemic classified as four 'generations': pre-1996 (preantiretroviral therapy (ART)), 1997-2005 (complex ARTs), 2006-2012 (simpler ARTs) and 2013 onwards (recent diagnoses). RESULTS: Some important differences were identified; for earlier generations, the visible illness and deaths from AIDS made it harder to engage with care following diagnosis. Subsequent decisions about starting treatment were deeply influenced by the fear of severe side effects from early ART. However, despite improvements in ART and life expectancy over the epidemic, we found a striking similarity across participants' accounts of the key stages of the care continuum, regardless of when they were diagnosed. Diagnosis was a major traumatic life event for almost everyone. Fear of testing positive or having low self-perceived risk affected the timing of testing and diagnosis. Engaging with care was facilitated by a flexible approach from services/clinicians. Initiating treatment was a major life decision. CONCLUSION: We found patients' experiences are influenced by when they were diagnosed, with earliest cohorts facing substantial challenges. However, being diagnosed with HIV and starting treatment continue to be significant life-altering events even in the era of effective, simple treatments. Despite the advances of biomedical treatment, services should continue to recognise the needs of patients for whom the diagnosis and treatment remain significant challenges.

Migration as a risk and a livelihood strategy: HIV across the life course of migrant families in India.

Migrant workers are understood to be vulnerable to HIV. However, little is known about the experience of migration-based households following HIV infection. This qualitative study examined the migration-HIV relationship beyond the point of infection, looking at how it affects livelihood choices, household relationships and the economic viability of migrant families. We conducted semi-structured interviews with 33 HIV-positive migrant men and women recruited from an anti-retroviral therapy (ART) centre in north India. Following infection among the migrant men, contact with free, public-sector HIV services was often made late, after the development of debilitating symptoms, abandonment of migrant work and return to native villages. After enrolment at the ART centre participants' health eventually stabilised but they now faced serious economic debt, an inflexible treatment regimen and reduced physical strength. Insecure migrant job markets, monthly drug collection and discriminatory employment policies impeded future migration plans. HIV-positive wives of migrants occupied an insecure position in the rural marital household that depended on their husbands' health and presence of children. The migration-HIV relationship continued to shape the life course of migrant families beyond the point of infection, often exposing them again to the economic insecurity that migration had helped to overcome, threatening their long-term survival.

Complex routes into HIV care for migrant workers: a qualitative study from north India.

Migrant workers are designated a bridge population in the spread of HIV and therefore if infected, should be diagnosed and treated early. This study examined pathways to HIV diagnosis and access to care for rural-to-urban circular migrant workers and partners of migrants in northern India, identifying structural, social and individual level factors that shaped their journeys into care. We conducted a qualitative study using in-depth interviews with HIV-positive men (n = 20) and women (n = 13) with a history of circular migration, recruited from an antiretroviral therapy centre in one district of Uttar Pradesh, north India. Migrants and partners of migrants faced a complex series of obstacles to accessing HIV testing and care. Employment insecurity, lack of entitlement to sick pay or subsidised healthcare at destination and the household's economic reliance on their migration-based livelihood led many men to continue working until they became incapacitated by HIV-related morbidity. During periods of deteriorating health they often exhausted their savings on private treatments focused on symptom management, and sought HIV testing and treatment at a public hospital only following a medical or financial emergency. Wives of migrants had generally been diagnosed following their husbands' diagnosis or death, with access to testing and treatment mediated via family members. For some, a delay in disclosure of husband's HIV status led to delays in their own testing. Diagnosing and treating HIV infection early is important in slowing down the spread of the epidemic and targeting those at greatest risk should be a priority. However, despite targeted campaigns, circumstances associated with migration may prevent migrant workers and their partners from accessing testing and treatment until they become sick. The insecurity of migrant work, the dominance of private healthcare and gender differences in health-seeking behaviour delay early diagnosis and treatment initiation.