"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.

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.

Interventions, outcomes and outcome measurement instruments in stillbirth care research: A systematic review to inform the development of a core outcome set.

BACKGROUND: A core outcome set could address inconsistent outcome reporting and improve evidence for stillbirth care research, which have been identified as an important research priority. OBJECTIVES: To identify outcomes and outcome measurement instruments reported by studies evaluating interventions after the diagnosis of a stillbirth. SEARCH STRATEGY: Amed, BNI, CINAHL, ClinicalTrials.gov, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO, and WHO ICTRP from 1998 to August 2021. SELECTION CRITERIA: Randomised and non-randomised comparative or non-comparative studies reporting a stillbirth care intervention. DATA COLLECTION AND ANALYSIS: Interventions, outcomes reported, definitions and outcome measurement tools were extracted. MAIN RESULTS: Forty randomised and 200 non-randomised studies were included. Fifty-eight different interventions were reported, labour and birth care (52 studies), hospital bereavement care (28 studies), clinical investigations (116 studies), care in a multiple pregnancy (2 studies), psychosocial support (28 studies) and care in a subsequent pregnancy (14 studies). A total of 391 unique outcomes were reported and organised into 14 outcome domains: labour and birth; postpartum; delivery of care; investigations; multiple pregnancy; mental health; emotional functioning; grief and bereavement; social functioning; relationship; whole person; subsequent pregnancy; subsequent children and siblings and economic. A total of 242 outcome measurement instruments were used, with 0-22 tools per outcome. CONCLUSIONS: Heterogeneity in outcome reporting, outcome definition and measurement tools in care after stillbirth exists. Considerable research gaps on specific intervention types in stillbirth care were identified. A core outcome set is needed to standardise outcome collection and reporting for stillbirth care research.

Mothers' involvement in providing care for their hospitalised sick newborns in Kenya: a focused ethnographic account.

INTRODUCTION: There is growing evidence that parental participation in the care of small and sick newborns benefits both babies and parents. While studies have investigated the roles that mothers play in newborn units in high income contexts (HIC), there is little exploration of how contextual factors interplay to influence the ways in which mothers participate in the care of their small and sick newborn babies in very resource constrained settings such as those found in many countries in sub-Saharan Africa. METHODS: Ethnographic methods (observations, informal conversations and formal interviews) were used to collect data during 627 h of fieldwork between March 2017 and August 2018 in the neonatal units of one government and one faith-based hospital in Kenya. Data were analysed using a modified grounded theory approach. RESULTS: There were marked differences between the hospitals in the participation by mothers in the care of their sick newborn babies. The timing and types of caring task that the mothers undertook were shaped by the structural, economic and social context of the hospitals. In the resource constrained government funded hospital, the immediate informal and unplanned delegation of care to mothers was routine. In the faith-based hospital mothers were initially separated from their babies and introduced to bathing and diaper change tasks slowly under the close supervision of nurses. In both hospitals appropriate breast-feeding support was lacking, and the needs of the mothers were largely ignored. CONCLUSION: In highly resource constrained hospitals with low nurse to baby ratios, mothers are required to provide primary and some specialised care to their sick newborns with little information or support on how undertake the necessary tasks. In better resourced hospital settings, most caring tasks are initially performed by nurses leaving mothers feeling powerless and worried about their capacity to care for their babies after discharge. Interventions need to focus on how to better equip hospitals and nurses to support mothers in caring for their sick newborns, promoting family centred care.

Cross-sectional diagnostic accuracy study of self-testing for proteinuria during hypertensive pregnancies: The UDIP study.

OBJECTIVE: To determine the accuracy of self-testing for proteinuria during pregnancy. DESIGN: Diagnostic accuracy study. SETTING: Antenatal clinics, maternity assessment units and inpatient wards at three hospital sites. POPULATION OR SAMPLE: 345 pregnant women. METHODS: Pregnant women self-tested in-clinic for urinary protein using visually read dipsticks with samples then sent for laboratory estimation of the spot protein-creatinine ratio (PCR) (primary reference test). Secondary index tests included testing by antenatal healthcare professionals and an automated colorimetric reader. MAIN OUTCOME MEASURES: Sensitivity, specificity, negative predictive value, positive predictive value and likelihood ratios were calculated for self-testing (primary index test) along with healthcare professional and colorimetric testing compared to the primary reference test (PCR). RESULTS: 335/345 (97%) had sufficient data to be included in the analysis. Self-testing had a sensitivity of 0.71 (95% confidence interval [CI] 0.62-0.79) and a specificity of 0.89 (95% CI 0.84-0.92) compared to PCR. Sensitivity and specificity of testing by healthcare professionals and the colorimetric reader were similar: sensitivity 0.73 (95% CI 0.64-0.80) and 0.78 (95% CI 0.69-0.85), respectively; specificity 0.88 (95% CI 0.82-0.92) and 0.83 (95% CI 0.78-0.88), respectively. CONCLUSION: Pregnant women can visually read a dipstick for urinary protein with similar accuracy to antenatal healthcare professionals. Automated colorimetric testing was not significantly different, in contrast to some previous studies. Self-testing has the potential to form part of a self-monitoring regime in pregnancy.

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.

Effect of Self-monitoring of Blood Pressure on Blood Pressure Control in Pregnant Individuals With Chronic or Gestational Hypertension: The BUMP 2 Randomized Clinical Trial.

Importance: Inadequate management of elevated blood pressure is a significant contributing factor to maternal deaths. The role of blood pressure self-monitoring in pregnancy in improving clinical outcomes for the pregnant individual and infant is unclear. Objective: To evaluate the effect of blood pressure self-monitoring, compared with usual care alone, on blood pressure control and other related maternal and infant outcomes, in individuals with pregnancy hypertension. Design, Setting, and Participants: Unblinded, randomized clinical trial that recruited between November 2018 and September 2019 in 15 hospital maternity units in England. Individuals with chronic hypertension (enrolled up to 37 weeks' gestation) or with gestational hypertension (enrolled between 20 and 37 weeks' gestation). Final follow-up was in May 2020. Interventions: Participants were randomized to either blood pressure self-monitoring using a validated monitor and a secure telemonitoring system in addition to usual care (n = 430) or to usual care alone (n = 420). Usual care comprised blood pressure measured by health care professionals at regular antenatal clinics. Main Outcomes and Measures: The primary maternal outcome was the difference in mean systolic blood pressure recorded by health care professionals between randomization and birth. Results: Among 454 participants with chronic hypertension (mean age, 36 years; mean gestation at entry, 20 weeks) and 396 with gestational hypertension (mean age, 34 years; mean gestation at entry, 33 weeks) who were randomized, primary outcome data were available from 444 (97.8%) and 377 (95.2%), respectively. In the chronic hypertension cohort, there was no statistically significant difference in mean systolic blood pressure for the self-monitoring groups vs the usual care group (133.8 mm Hg vs 133.6 mm Hg, respectively; adjusted mean difference, 0.03 mm Hg [95% CI, -1.73 to 1.79]). In the gestational hypertension cohort, there was also no significant difference in mean systolic blood pressure (137.6 mm Hg compared with 137.2 mm Hg; adjusted mean difference, -0.03 mm Hg [95% CI, -2.29 to 2.24]). There were 8 serious adverse events in the self-monitoring group (4 in each cohort) and 3 in the usual care group (2 in the chronic hypertension cohort and 1 in the gestational hypertension cohort). Conclusions and Relevance: Among pregnant individuals with chronic or gestational hypertension, blood pressure self-monitoring with telemonitoring, compared with usual care, did not lead to significantly improved clinic-based blood pressure control. Trial Registration: ClinicalTrials.gov Identifier: NCT03334149.

Effect of Self-monitoring of Blood Pressure on Diagnosis of Hypertension During Higher-Risk Pregnancy: The BUMP 1 Randomized Clinical Trial.

Importance: Inadequate management of elevated blood pressure (BP) is a significant contributing factor to maternal deaths. Self-monitoring of BP in the general population has been shown to improve the diagnosis and management of hypertension; however, little is known about its use in pregnancy. Objective: To determine whether self-monitoring of BP in higher-risk pregnancies leads to earlier detection of pregnancy hypertension. Design, Setting, and Participants: Unblinded, randomized clinical trial that included 2441 pregnant individuals at higher risk of preeclampsia and recruited at a mean of 20 weeks' gestation from 15 hospital maternity units in England between November 2018 and October 2019. Final follow-up was completed in April 2020. Interventions: Participating individuals were randomized to either BP self-monitoring with telemonitoring (n = 1223) plus usual care or usual antenatal care alone (n = 1218) without access to telemonitored BP. Main Outcomes and Measures: The primary outcome was time to first recorded hypertension measured by a health care professional. Results: Among 2441 participants who were randomized (mean [SD] age, 33 [5.6] years; mean gestation, 20 [1.6] weeks), 2346 (96%) completed the trial. The time from randomization to clinic recording of hypertension was not significantly different between individuals in the self-monitoring group (mean [SD], 104.3 [32.6] days) vs in the usual care group (mean [SD], 106.2 [32.0] days) (mean difference, -1.6 days [95% CI, -8.1 to 4.9]; P = .64). Eighteen serious adverse events were reported during the trial with none judged as related to the intervention (12 [1%] in the self-monitoring group vs 6 [0.5%] in the usual care group). Conclusions and Relevance: Among pregnant individuals at higher risk of preeclampsia, blood pressure self-monitoring with telemonitoring, compared with usual care, did not lead to significantly earlier clinic-based detection of hypertension. Trial Registration: ClinicalTrials.gov Identifier: NCT03334149.

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.

"You Probably Won't Notice Any Symptoms": Blood Pressure in Pregnancy-Discourses of Contested Expertise in an Era of Self-Care and Responsibilization.

Pregnancy is not a disease or illness, but requires clinical surveillance as life-threatening complications can develop. Preeclampsia, one such potentially serious complication, puts both mother and baby at risk. Self-monitoring blood pressure in the general population is well established, and its potential in pregnancy is currently being explored. In the context of self-monitoring, the information and guidance given to women regarding hypertension, and the literature they themselves seek out during pregnancy, are vital to perceptions of disease risk and subsequent responses to, and management of, any symptoms. Drawing on online, offline, official, and unofficial sources of information, discourses are examined to provide analysis of how self-responsibilization is reflected in contemporary information, advice, and guidance drawn from multiple sources. A paradox emerges between the paternalistic and lay discourses that seek to challenge and regain control. Findings are discussed in the context of Foucault's governmentality and medical power.

Public involvement in the governance of population-level biomedical research: unresolved questions and future directions.

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance.

The challenges of caring for children who require complex medical care at home: 'The go between for everyone is the parent and as the parent that's an awful lot of responsibility'.

BACKGROUND: Increasing numbers of children with complex health-care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home. METHODS: We conducted a thematic analysis of eleven in-depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life. RESULTS: We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life-threatening), co-ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep-deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal. DISCUSSION: The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health-care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others.

'They don't know themselves, so how can they tell us?': parents navigating uncertainty at the frontiers of neonatal surgery.

When a baby is diagnosed with a condition needing surgery they, and their family, start down an uncertain and unknown path. Living with uncertainty underpins every stage of the journey from hospital to home. These journeys span the highly technical to the mundane. They are likely to involve, at crucial points, medicalised and specialised neonatal and surgical care in paediatric centres of excellence where parents are mere spectators. Yet ultimately parents are able to take their baby home, confident experts in their daily care. Drawing on narrative interviews with 42 UK parents whose baby underwent neonatal surgery, this paper explores how parents navigate this uncertainty through acquiring experiential and lay knowledge and developing expertise in their baby's condition and treatment options. These conditions are rare. Building on sociological understandings of the work of chronic illness, as well as more recent work on newborn screening, sharing information online and examinations of experiential knowledge, we explore lay knowledge and expertise as it intersects with biomedical and surgical frontiers. We demonstrate how the development of expertise is an emergent, three-stage process supported by both biomedical and lay knowledge and elucidate this process of knowledge-building as a scaffold through which to manage uncertainty.

Face-to-Face Compared With Online Collected Accounts of Health and Illness Experiences: A Scoping Review.

Advocates of online alternatives to face-to-face interviewing suggest online approaches save money and time, whereas others have raised concerns about the quality and content of the resulting data. These issues affect researchers designing and costing their studies and application reviewers and research funders. We conducted a scoping review of English language articles describing the range of online alternative approaches. Furthermore, we systematically identified studies directly comparing online alternatives with face-to-face approaches. Synthesis of these 11 articles (565 participants) suggests that online alternatives should not be viewed as a straightforward replacement for face-to-face, a particularly important finding given the rapid communication changes occurring in the COVID-19 pandemic. When applied with consideration of the evolving evidence on their strengths and weaknesses, online methods may increase the likelihood of obtaining the desired sample, but responses are shorter, less contextual information is obtained, and relational satisfaction and consensus development are lower.

Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.

BACKGROUND: Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. OBJECTIVES: To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. SEARCH STRATEGY: Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. INCLUSION CRITERIA: Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health-related research. DATA EXTRACTION AND SYNTHESIS: Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co-design workshops, we tested evidence-based resources based on the review findings. RESULTS: Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power-focused; priority-setting; study-focused; report-focused; and partnership-focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence-based facilitator notes for a "build your own framework" co-design workshop. CONCLUSION: The plethora of frameworks combined with evidence of limited transferability suggests that a single, off-the-shelf framework may be less useful than a menu of evidence-based resources which stakeholders can use to co-design their own frameworks.

Life-threatening complications in childbirth: a discursive analysis of fathers' accounts.

Objectives: To explore the discursive construction and social actions achieved by accounts given by men following a birth in which the mother developed life-threatening complications. Background: Existing qualitative research employing interpretative thematic analysis of men's accounts of births in which the mother developed life-threatening complications highlights men's expressions of distress and marginalisation. This paper extends this, adopting different epistemological and analytic approaches to those accounts. Methods: Audio recordings and transcripts of semi-structured interviews collected by Hinton et al. were re-analysed using an approach informed by narrative analysis, discursive psychology and the discursive action model. Participants were four white British men whose partners experienced a maternal 'near-miss' event. Results: This analysis illustrates how men in this study draw on cultural narratives of 'normal' birth to construct experiences. Narrative constructions highlight separation of health professionals from laymen. These men use a discourse of self-reliance within families to construct their path to recovery. Conclusion: The strength of available narratives of birth and limited accessibility of alternative ones may impact how men tell their experience. Men in this study discursively attend to issues of power, agency and male identity, re-establishing entitlement to speak about their experience, but construct emotional support as unavailable to them.

Birthplace choices: what are the information needs of women when choosing where to give birth in England? A qualitative study using online and face to face focus groups.

BACKGROUND: Current clinical guidelines and national policy in England support offering 'low risk' women a choice of birth setting. Options include: home, free-standing midwifery unit (FMU), alongside midwifery unit (AMU) or obstetric unit (OU). This study, which is part of a broader project designed to inform policy on 'choice' in relation to childbirth, aimed to provide evidence on UK women's experiences of choice and decision-making in the period since the publication of the Birthplace findings (2011) and new NICE guidelines (2014). This paper reports on findings relating to women's information needs when making decisions about where to give birth. METHODS: A qualitative focus group study including 69 women in the last trimester of pregnancy in England in 2015-16. Seven focus groups were conducted online via a bespoke web portal, and one was face-to-face. To explore different aspects of women's experience, each group included women with specific characteristics or options; planning a home birth, living in areas with lots of choice, living in areas with limited choice, first time mothers, living close to a FMU, living in opt-out AMU areas, living in socioeconomically disadvantaged areas and planning to give birth in an OU. Focus group transcripts were analysed thematically. RESULTS: Women drew on multiple sources when making choices about where to give birth. Sources included; the Internet, friends' recommendations and experiences, antenatal classes and their own personal experiences. Their midwife was not the main source of information. Women wanted the option to discuss and consider their birth preferences throughout their pregnancy, not at a fixed point. CONCLUSIONS: Birthplace choice is informed by many factors. Women may encounter fewer overt obstacles to exercising choice than in the past, but women do not consistently receive information about birthplace options from their midwife at a time and in a manner that they find helpful. Introducing options early in pregnancy, but deferring decision-making about birthplace until a woman has had time to consider and explore options and discuss these with her midwife, might facilitate choice.

Blood pressure self-monitoring in pregnancy: examining feasibility in a prospective cohort study.

BACKGROUND: Raised blood pressure (BP) affects approximately 10% of pregnancies worldwide, and a high proportion of affected women develop pre-eclampsia. This study aimed to evaluate the feasibility of self-monitoring of BP in pregnancy in women at higher risk of pre-eclampsia. METHODS: This prospective cohort study of self-monitoring BP in pregnancy was carried out in two hospital trusts in Birmingham and Oxford and thirteen primary care practices in Oxfordshire. Eligible women were those defined by the UK National Institute for Health and Care Excellence (NICE) guidelines as at higher risk of pre-eclampsia. A total of 201 participants were recruited between 12 and 16 weeks of pregnancy and were asked to take two BP readings twice daily three times a week through their pregnancy. Primary outcomes were recruitment, retention and persistence of self-monitoring. Study recruitment and retention were analysed with descriptive statistics. Survival analysis was used to evaluate the persistence of self-monitoring and the performance of self-monitoring in the early detection of gestational hypertension, compared to clinic BP monitoring. Secondary outcomes were the mean clinic and self-monitored BP readings and the performance of self-monitoring in the detection of gestational hypertension and pre-eclampsia compared to clinic BP. RESULTS: Of 201 women recruited, 161 (80%) remained in the study at 36 weeks or to the end of their pregnancy, 162 (81%) provided any home readings suitable for analysis, 148 (74%) continued to self-monitor at 20 weeks and 107 (66%) at 36 weeks. Self-monitored readings were similar in value to contemporaneous matched clinic readings for both systolic and diastolic BP. Of the 23 who developed gestational hypertension or pre-eclampsia and self-monitored, 9 (39%) had a raised home BP prior to a raised clinic BP. CONCLUSIONS: Self-monitoring of BP in pregnancy is feasible and has potential to be useful in the early detection of gestational hypertensive disorders but maintaining self-monitoring throughout pregnancy requires support and probably enhanced training.

Blood pressure self-monitoring in pregnancy (BuMP) feasibility study; a qualitative analysis of women's experiences of self-monitoring.

BACKGROUND: Hypertensive disorders in pregnancy are a leading cause of maternal and fetal morbidity worldwide. Raised blood pressure (BP) affects 10% of pregnancies worldwide, of which almost half develop pre-eclampsia. The proportion of pregnant women who have risk factors for pre-eclampsia (such as pre-existing hypertension, obesity and advanced maternal age) is increasing. Pre-eclampsia can manifest itself before women experience symptoms and can develop between antenatal visits. Incentives to improve early detection of gestational hypertensive disorders are therefore strong and self-monitoring of blood pressure (SMBP) in pregnancy might be one means to achieve this, whilst improving women's involvement in antenatal care. The Blood Pressure Self-Monitoring in Pregnancy (BuMP) study aimed to evaluate the feasibility and acceptability of SMBP in pregnancy. METHODS: To understand women's experiences of SMBP during pregnancy, we undertook a qualitative study embedded within the BuMP observational feasibility study. Women who were at higher risk of developing hypertension and/or pre-eclampsia were invited to take part in a study using SMBP and also invited to take part in an interview. Semi-structured interviews were conducted at the women's homes in Oxfordshire and Birmingham with women who were self-monitoring their BP as part of the BuMP feasibility study in 2014. Interviews were conducted by a qualitative researcher and transcribed verbatim. A framework approach was used for analysis. RESULTS: Fifteen women agreed to be interviewed. Respondents reported general willingness to engage with monitoring their own BP, feeling that it could reduce anxiety around their health during pregnancy, particularly if they had previous experience of raised BP or pre-eclampsia. They felt able to incorporate self-monitoring into their weekly routines, although this was harder post-partum. Self-monitoring of BP made them more aware of the risks of hypertension and pre-eclampsia in pregnancy. Feelings of reassurance and empowerment were commonly reported by the women in our sample. CONCLUSIONS: SMBP in pregnancy was both acceptable and feasible to women in this small pilot study.

Quality and reporting of large-scale improvement programmes: a review of maternity initiatives in the English NHS, 2010-2023.

BACKGROUND: Large-scale improvement programmes are a frequent response to quality and safety problems in health systems globally, but have mixed impact. The extent to which they meet criteria for programme quality, particularly in relation to transparency of reporting and evaluation, is unclear. AIM: To identify large-scale improvement programmes focused on intrapartum care implemented in English National Health Service maternity services in the period 2010-2023, and to conduct a structured quality assessment. METHODS: We drew on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidance to inform the design and reporting of our study. We identified relevant programmes using multiple search strategies of grey literature, research databases and other sources. Programmes that met a prespecified definition of improvement programme, that focused on intrapartum care and that had a retrievable evaluation report were subject to structured assessment using selected features of programme quality. RESULTS: We identified 1434 records via databases and other sources. 14 major initiatives in English maternity services could not be quality assessed due to lack of a retrievable evaluation report. Quality assessment of the 15 improvement programmes meeting our criteria for assessment found highly variable quality and reporting. Programme specification was variable and mostly low quality. Only eight reported the evidence base for their interventions. Description of implementation support was poor and none reported customisation for challenged services. None reported reduction of inequalities as an explicit goal. Only seven made use of explicit patient and public involvement practices, and only six explicitly used published theories/models/frameworks to guide implementation. Programmes varied in their reporting of the planning, scope and design of evaluation, with weak designs evident. CONCLUSIONS: Poor transparency of reporting and weak or absent evaluation undermine large-scale improvement programmes by limiting learning and accountability. This review indicates important targets for improving quality in large-scale programmes.