Understanding the co-construction of safety in the paediatric intensive care unit: A meta-ethnography of parents' experiences.

BACKGROUND: Children experiencing critical illness or injury may require admission to a paediatric intensive care unit (PICU) to receive life-sustaining or life-saving treatment. Studies have explored the experience of parents with a child in PICU but tend to focus on subgroups of children or specific healthcare systems. Therefore, we aimed to undertake a meta-ethnography to draw together the published research. METHODS: A systematic search strategy was developed to identify qualitative studies, which had explored the experiences of parents with a critically ill child treated in a PICU. A meta-ethnography was undertaken following the structured steps of identifying the topic; undertaking a systematic search; reading the research; determining how the studies relate and translate into each other; and synthesising and expressing the results. RESULTS: We identified 2989 articles from our search and after a systematic series of exclusions, 15 papers remaining for inclusion. We explored the original parent voices (first order) and the interpretation of the study authors (second order) to identify three third-order concepts (our interpretation of the findings), which related to technical, relational and temporal factors. These factors influenced parents' experiences, providing both barriers and facilitators to how parents and caregivers experienced the time their child was in the PICU. The dynamic and co-constructed nature of safety provided an analytical overarching frame of reference. CONCLUSION: This synthesis demonstrates novel ways in which parents and caregivers can contribute to the vital role of ensuring a co-created safe healthcare environment for their child when receiving life-saving care within the PICU.

Being a patient in a crowded emergency department: a qualitative service evaluation.

BACKGROUND: Emergency department (ED) crowding causes increased mortality. Professionals working in crowded departments feel unable to provide high-quality care and are predisposed to burnout. Awareness of the impact on patients, however, is limited to metrics and surveys rather than understanding perspectives. This project investigated patients' experiences and identified mitigating interventions. METHODS: A qualitative service evaluation was undertaken in a large UK ED. Adults were recruited during periods of high occupancy or delayed transfers. Semi-structured interviews explored experience during these attendances. Participants shared potential mitigating interventions. Analysis was based on the interpretative phenomenological approach. Verbatim transcripts were read, checked for accuracy, re-read and discussed during interviewer debriefing. Reflections about positionality informed the interpretative process. RESULTS: Seven patients and three accompanying partners participated. They were aged 24-87 with characteristics representing the catchment population. Participants' experiences were characterised by 'loss of autonomy', 'unmet expectations' and 'vulnerability'. Potential mitigating interventions centred around information provision and better identification of existing ED facilities for personal needs. CONCLUSION: Participants attending a crowded ED experienced uncertainty, helplessness and discomfort. Recommendations included process and environmental orientation.

Creating a home with a critically ill child: A qualitative study exploring the experiences of parents of children admitted to paediatric critical care following treatment in neonatal care.

BACKGROUND: Survival of children with complex medical conditions has increased over time. Around 5% of children admitted to a neonatal unit (NNU) later have an admission to a paediatric intensive care unit (PICU) in early life. No work to date has explored the needs of parents who have a child admitted to both of these healthcare settings. OBJECTIVE: The overall aim of this study was to understand parents' experiences as they navigate the transition between admissions to the NNU and the PICU. This paper reports on one of the themes (creating a home) identified inductively from the dataset. METHODS: We used a qualitative research design using semistructured interviews with parents who had a child (or children) who had been admitted to neonatal care after birth and then subsequently were also admitted to a PICU. We recruited a national purposive sample of parents with experiences of having a child treated in an NNU before being admitted to the PICU. We undertook the interviews and transcribed them before taking a reflexive thematic analysis approach. RESULTS: A total of 15 mothers and three fathers, of 17 children, were interviewed between January and March 2022. 'We identified 'creating a home' as a key inductive theme with three subthemes: (i) developing parental roles; (ii) creating a physical home; and (iii) creating core memories. CONCLUSIONS: There is a growing cohort of children living with chronic health conditions. In this work, we have explored how their parents establish a home whilst often spending significant periods within the public arena of intensive care. Families across settings need support from healthcare professionals to help them develop their role as parents, build a home, and to create memories together.

Measuring health-related quality of life of older people with frailty receiving acute care: feasibility and psychometric performance of the EuroQol EQ-5D.

BACKGROUND: Although outcome goals for acute healthcare among older people living with frailty often include Health-Related Quality of Life (HRQoL) and other patient-reported outcome measures (PROMs), current quality metrics usually focus on waiting times and survival. Lay and patient review have identified the EuroQol EQ-5D as a candidate measure for this setting. This research appraised the EQ-5D for feasibility, psychometric performance, and respondents' outcomes in the acute frailty setting. METHODS: People aged 65 + with Clinical Frailty Scale (CFS) 5-8 were recruited from eight UK hospitals' emergency care and acute admissions settings. They completed the five-level EQ-5D and the EQ-VAS. Feasibility was assessed with completion times and completeness. For reliability, response distributions and internal consistency were analysed. Finally, EQ-Index values were compared with demographic characteristics and service outcomes for construct validity. RESULTS: The 232 participants were aged 65-102. 38% responded in emergency departments and 62% in admissions wards. Median completion time was 12 (IQR, 11) minutes. 98% responses were complete. EQ-5D had acceptable response distribution (SD 1.1-1.3) and internal consistency (Cronbach's alpha 0.69). EQ-VAS demonstrated a midpoint response pattern. Median EQ-Index was 0.574 (IQR, 0.410) and was related positively with increasing age (p = 0.010) and negatively with CFS (p < 0.001). Participants with higher CFS had more frequent problems with mobility, self-care, and usual activities. CONCLUSIONS: Administration of the EQ-5D was feasible in these emergency and acute frailty care settings. EQ-5D had acceptable properties, while EQ-VAS appeared problematic. Participants with more severe frailty had also poorer HRQoL.

Healthcare professionals' experiences and perceptions regarding health care of indigenous pregnant women in Ecuador.

BACKGROUND: Pregnancy is an important life experience that requires uniquely tailored approach to health care. The socio-cultural care practices of indigenous pregnant women (IPW) are passed along the maternal line with respect to identity, worldview and nature. The cultural differences between non-indigenous healthcare professionals (HPs) and IPW could present a great challenge in women's health care. This article presents an analysis from a human rights and gender perspective of this potential cultural divide that could affect the health of the IPW in an Andean region of Ecuador with the objective of describing the health challenges of IPWs as rights holders through the experiences and perceptions of HP as guarantors of rights. METHODS: We conducted 15 in-depth interviews with HPs who care for IPW in Chimborazo, Pichincha provinces of Ecuador. We utilized a semi-structured interview guide including questions about the experiences and perceptions of HPs in delivering health care to IPW. The interviews were recorded, transcribed and subjected to thematic analysis in Spanish and translated for reporting. RESULTS: We found disagreements and discrepancies in the Ecuadorian health service that led to the ignorance of indigenous cultural values. Common characteristics among the indigenous population such as illiteracy, low income and the age of pregnancy are important challenges for the health system. The gender approach highlights the enormous challenges: machismo, gender stereotypes and communication problems that IPWs face in accessing quality healthcare. CONCLUSIONS: Understanding the diverse perspectives of IPW, acknowledging their human rights particularly those related to gender, has the potential to lead to more comprehensive and respectful health care delivery in Ecuador. Further, recognizing there is a gender and power differential between the provider and the IPW can lead to improvements in the quality of health care delivery and reproductive, maternal and child health outcomes.

What matters most in acute care: an interview study with older people living with frailty.

BACKGROUND: Healthcare outcome goals are central to person-centred acute care, however evidence among older people is scarce. Older people who are living with frailty have distinct requirements for healthcare delivery and have distinct risk for adverse outcomes from healthcare. There is insufficient evidence for whether those living with frailty also have distinct healthcare outcome goals. This study explored the nature of acute care outcome goals in people living with frailty. METHODS: Healthcare outcome goals were explored using semi-structured patient interviews. Participants aged over 65 with Clinical Frailty Score 5-8 (mild to very severe frailty) were recruited during their first 72 hours in a UK hospital. Purposive, maximum variation sampling was guided by lay partners from a Patient and Public Involvement Forum specialising in ageing-related research. Qualitative analysis used a blended approach based on framework and constant comparative methodologies for the identification of themes. Findings were validated through triangulation with participant, lay partner, and technical expert review. RESULTS: The 22 participants were aged 71 to 98 and had mild to very severe frailty. One quarter were living with dementia. Most participants had reflected on their situation and considered their outcome goals. Theme categories (and corresponding sub-categories) were 'Autonomy' (information, control, and security) and 'Functioning' (physical, psychosocial, and relief). A novel 'security' theme was identified, whereby participants sought to feel safe in their usual living place and with their health problems. Those living with milder frailty were concerned to maintain ability to support loved ones, while those living with most severe frailty were concerned about burdening others. CONCLUSIONS: Outcome goals for acute care among older participants living with frailty were influenced by the insecurity of their situation and fear of deterioration. Patients may be supported to feel safe and in control through appropriate information provision and functional support.

Am I safe? An Interpretative Phenomenological Analysis of Vulnerability as Experienced by Patients With Complications Following Surgery.

Abdominal surgery carries with it risks of complications. Little is known about patients' experiences of post-surgical deterioration. There is a real need to understand the psychosocial as well as the biological aspects of deterioration in order to improve care and outcomes for patients. Drawing on in-depth interviews with seven abdominal surgery survivors, we present an idiographic account of participants' experiences, situating their contribution to safety within their personal lived experiences and meaning-making of these episodes of deterioration. Our analysis reveals an overarching group experiential theme of vulnerability in relation to participants' experiences of complications after abdominal surgery. This encapsulates the uncertainty of the situation all the participants found themselves in, and the nature and seriousness of their health conditions. The extent of participants' vulnerability is revealed by detailing how they made sense of their experience, how they negotiated feelings of (un)safety drawing on their relationships with family and staff and the legacy of feelings they were left with when their expectations of care (care as imagined) did not meet the reality of their experiences (care as received). The participants' experiences highlight the power imbalance between patients and professionals in terms of whose knowledge counts within the hospital context. The study reveals the potential for epistemic injustice to arise when patients' concerns are ignored or dismissed. Our data has implications for designing strategies to enable escalation of care, both in terms of supporting staff to deliver compassionate care, and in strengthening patient and family involvement in rescue processes.

Healthcare stakeholders' perceptions and experiences of factors affecting the implementation of critical care telemedicine (CCT): qualitative evidence synthesis.

BACKGROUND: Critical care telemedicine (CCT) has long been advocated for enabling access to scarce critical care expertise in geographically-distant areas. Additional advantages of CCT include the potential for reduced variability in treatment and care through clinical decision support enabled by the analysis of large data sets and the use of predictive tools. Evidence points to health systems investing in telemedicine appearing better prepared to respond to sudden increases in demand, such as during pandemics. However, challenges with how new technologies such as CCT are implemented still remain, and must be carefully considered. OBJECTIVES: This synthesis links to and complements another Cochrane Review assessing the effects of interactive telemedicine in healthcare, by examining the implementation of telemedicine specifically in critical care. Our aim was to identify, appraise and synthesise qualitative research evidence on healthcare stakeholders' perceptions and experiences of factors affecting the implementation of CCT, and to identify factors that are more likely to ensure successful implementation of CCT for subsequent consideration and assessment in telemedicine effectiveness reviews. SEARCH METHODS: We searched MEDLINE, Embase, CINAHL, and Web of Science for eligible studies from inception to 14 October 2019; alongside 'grey' and other literature searches. There were no language, date or geographic restrictions. SELECTION CRITERIA: We included studies that used qualitative methods for data collection and analysis. Studies included views from healthcare stakeholders including bedside and CCT hub critical care personnel, as well as administrative, technical, information technology, and managerial staff, and family members. DATA COLLECTION AND ANALYSIS: We extracted data using a predetermined extraction sheet. We used the Critical Appraisal Skills Programme (CASP) qualitative checklist to assess the methodological rigour of individual studies. We followed the Best-fit framework approach using the Consolidated Framework for Implementation Research (CFIR) to inform our data synthesis.  We classified additional themes not captured by CFIR under a separate theme. We used the GRADE CERQual approach to assess confidence in the findings. MAIN RESULTS: We found 13 relevant studies. Twelve were from the USA and one was from Canada. Where we judged the North American focus of the studies to be a concern for a finding's relevance, we have reflected this in our assessment of confidence in the finding. The studies explored the views and experiences of bedside and hub critical care personnel; administrative, technical, information technology, and managerial staff; and family members. The intensive care units (ICUs) were from tertiary hospitals in urban and rural areas. We identified several factors that could influence the implementation of CCT. We had high confidence in the following findings: Hospital staff and family members described several advantages of CCT. Bedside and hub staff strongly believed that the main advantage of CCT was having access to experts when bedside physicians were not available. Families also valued having access to critical care experts. In addition, hospital staff described how CCT could support clinical decision-making and mentoring of junior staff.  Hospital staff greatly valued the nature and quality of social networks between the bedside and CCT hub teams. Key issues for them were trust, acceptance, teamness, familiarity and effective communication between the two teams. Interactions between some bedside and CCT hub staff were featured with tension, frustration and conflict. Staff on both sides commonly described disrespect of their expertise, resistance and animosity. Hospital staff thought it was important to promote and offer training in the use of CCT before its implementation. This included rehearsing every step in the process, offering staff opportunities to ask questions and disseminating learning resources. Some also complained that experienced staff were taken away from bedside care and re-allocated to the CCT hub team. Hospital staff's attitudes towards, knowledge about and value placed on CCT influenced acceptance of CCT. Staff were positive towards CCT because of its several advantages. But some were concerned that the CCT hub staff were not able to understand the patient's situation through the camera. Some were also concerned about confidentiality of patient data. We also identified other factors that could influence the implementation of CCT, although our confidence in these findings is moderate or low. These factors included the extent to which telemedicine software was adaptable to local needs, and hub staff were aware of local norms; concerns about additional administrative work and cost; patients' and families' desire to stay close to their local community; the type of hospital setting; the extent to which there was support from senior leadership; staff access to information about policies and procedures; individuals' stage of change; staff motivation, competence and values; clear strategies for staff engagement; feedback about progress; and the impact of CCT on staffing levels. AUTHORS' CONCLUSIONS: Our review identified several factors that could influence the acceptance and use of telemedicine in critical care. These include the value that hospital staff and family members place on having access to critical care experts, staff access to sufficient training, and the extent to which healthcare providers at the bedside and the critical care experts supporting them from a distance acknowledge and respect each other's expertise. Further research, especially in contexts other than North America, with different cultures, norms and practices will strengthen the evidence base for the implementation of CCT internationally and our confidence in these findings. Implementation of CCT appears to be growing in importance in the context of global pandemic management, especially in countries with wide geographical dispersion and limited access to critical care expertise. For successful implementation, policymakers and other stakeholders should consider pre-empting and addressing factors that may affect implementation, including strengthening teamness between bedside and hub teams; engaging and supporting frontline staff; training ICU clinicians on the use of CCT prior to its implementation; and ensuring staff have access to information and knowledge about when, why and how to use CCT for maximum benefit.

Patient-reported outcome and experience measures in geriatric emergency medicine.

Older people with frailty and health crises have complex physical and social needs. Modern emergency care systems are fast-flowing, using protocols optimised for single-problem presentations. Systems must incorporate individualised care to best serve people with multiple problems. Healthcare quality is typically appraised with service metrics, such as department length of stay and mortality. Worldwide, patient-reported outcome measures (PROM) and patient-reported experience measures (PREM) are increasingly used in research, service development and performance evaluation, paving the ground for their use to support individual clinical decision-making. The PROMs and PREMs are person-centred metrics, which inform healthcare decisions at the individual level and which at the strategic level drive improvement through comparison of interprovider effectiveness. To date, there is no PROM or PREM specifically developed for older people with frailty and emergency care needs.

Interventions to increase patient and family involvement in escalation of care for acute life-threatening illness in community health and hospital settings.

BACKGROUND: There is now a rising commitment to acknowledge the role patients and families play in contributing to their safety. This review focuses on one type of involvement in safety - patient and family involvement in escalation of care for serious life-threatening conditions i.e. helping secure a step-up to urgent or emergency care - which has been receiving increasing policy and practice attention. This review was concerned with the negotiation work that patient and family members undertake across the emergency care escalation pathway, once contact has been made with healthcare staff. It includes interventions aiming to improve detection of symptoms, communication of concerns and staff response to these concerns. OBJECTIVES: To assess the effects of interventions designed to increase patient and family involvement in escalation of care for acute life-threatening illness on patient and family outcomes, treatment outcomes, clinical outcomes, patient and family experience and adverse events. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL, MEDLINE (OvidSP), Embase (OvidSP), PsycINFO (OvidSP) ClinicalTrials.gov and the World Health Organization (WHO) International Clinical Trials Registry Platform from 1 Jan 2000 to 24 August 2018. The search was updated on 21 October 2019. SELECTION CRITERIA: We included randomised controlled trials (RCTs) and cluster-randomised controlled trials where the intervention focused on patients and families working with healthcare professionals to ensure care received for acute deterioration was timely and appropriate. A key criterion was to include an interactive element of rehearsal, role play, modelling, shared language, group work etc. to the intervention to help patients and families have agency in the process of escalation of care. The interventions included components such as enabling patients and families to detect changes in patients' conditions and to speak up about these changes to staff. We also included studies where the intervention included a component targeted at enabling staff response. DATA COLLECTION AND ANALYSIS: Seven of the eight authors were involved in screening; two review authors independently extracted data and assessed the risk of bias of included studies, with any disagreements resolved by discussion to reach consensus. Primary outcomes included patient and family outcomes, treatment outcomes, clinical outcomes, patient and family experience and adverse events. Our advisory group (four users and four providers) ensured that the review was of relevance and could inform policy and practice. MAIN RESULTS: We included nine studies involving 436,684 patients and family members and one ongoing study. The published studies focused on patients with specific conditions such as coronary artery disease, ischaemic stroke, and asthma, as well as pregnant women, inpatients on medical surgical wards, older adults and high-risk patients with a history of poor self-management. While all studies tested interventions versus usual care, for four studies the usual care group also received educational or information strategies. Seven of the interventions involved face-to-face, interactional education/coaching sessions aimed at patients/families while two provided multi-component education programmes which included components targeted at staff as well as patients/families. All of the interventions included: (1) an educational component about the acute condition and preparedness for future events such as stroke or change in fetal movements: (2) an engagement element (self-monitoring, action plans); while two additionally focused on shared language or communication skills. We had concerns about risk of bias for all but one of the included studies in respect of one or more criteria, particularly regarding blinding of participants and personnel. Our confidence in results regarding the effectiveness of interventions was moderate to low. Low-certainty evidence suggests that there may be moderate improvement in patients' knowledge of acute life-threatening conditions, danger signs, appropriate care-seeking responses, and preparedness capacity between interactional patient-facing interventions and multi-component programmes and usual care at 12 months (MD 4.20, 95% CI 2.44 to 5.97, 2 studies, 687 participants). Four studies in total assessed knowledge (3,086 participants) but we were unable to include two other studies in the pooled analysis due to differences in the way outcome measures were reported. One found no improvement in knowledge but higher symptom preparedness at 12 months. The other study found an improvement in patients' knowledge about symptoms and appropriate care-seeking responses in the intervention group at 18 months compared with usual care. Low-certainty evidence from two studies, each using a different measure, meant that we were unable to determine the effects of patient-based interventions on self-efficacy. Self-efficacy was higher in the intervention group in one study but there was no difference in the other compared with usual care. We are uncertain whether interactional patient-facing and multi-component programmes improve time from the start of patient symptoms to treatment due to low-certainty evidence for this outcome. We were unable to combine the data due to differences in outcome measures. Three studies found that arrival times or prehospital delay time was no different between groups. One found that delay time was shorter in the intervention group. Moderate-certainty evidence suggests that multi-component interventions probably have little or no impact on mortality rates. Only one study on a pregnant population was eligible for inclusion in the review, which found no difference between groups in rates of stillbirth. In terms of unintended events, we found that interactional patient-facing interventions to increase patient and family involvement in escalation of care probably have few adverse effects on patient's anxiety levels (moderate-certainty evidence). None of the studies measured or reported patient and family perceptions of involvement in escalation of care or patient and family experience of patient care. Reported outcomes related to healthcare professionals were also not reported in any studies. AUTHORS' CONCLUSIONS: Our review identified that interactional patient-facing interventions and multi-component programmes (including staff) to increase patient and family involvement in escalation of care for acute life-threatening illness may improve patient and family knowledge about danger signs and care-seeking responses, and probably have few adverse effects on patient's anxiety levels when compared to usual care. Multi-component interventions probably have little impact on mortality rates. Further high-quality trials are required using multi-component interventions and a focus on relational elements of care. Cognitive and behavioural outcomes should be included at patient and staff level.

Understanding and managing uncertainty in health care: revisiting and advancing sociological contributions.

In this collection we revisit the enduring phenomenon of uncertainty in health care, and demonstrate how it still offers coherence and significance as an analytic concept. Through empirical studies of contemporary examples of health care related uncertainties and their management, our collection explores the different ways in which uncertainty may be articulated, enacted and experienced. The papers address a diverse range of healthcare contexts - Alzheimer's disease, neonatal surgery, cardiovascular disease prevention, cancer, addiction (use of alcohol and other drugs during pregnancy), mental health/disorders and medical education - and many tackle issues of contemporary relevance, such as an ageing population, and novel medical interventions and their sequelae. These empirical papers are complemented by a further theoretical contribution, which considers the role of 'implicit normativity' in masking and containing potential ethical uncertainty. By mapping themes across the collection, in this introduction we present a number of core analytical strands: (1) conceptualising uncertainty; (2) intersections of uncertainty with aspects of care; (3) managing uncertainty; and (4) structural constraints, economic austerity and uncertainty work. We reflect on the methodological and theoretical stances used to think sociologically about uncertainty in health care, and the strengths, silences and gaps we observe in the collection. We conclude by considering the implications of the insights gained for 'synthesising certainty' in practice and for future research in this area.

Improving the normalization of complex interventions: part 2 - validation of the NoMAD instrument for assessing implementation work based on normalization process theory (NPT).

INTRODUCTION: Successful implementation and embedding of new health care practices relies on co-ordinated, collective behaviour of individuals working within the constraints of health care settings. Normalization Process Theory (NPT) provides a theory of implementation that emphasises collective action in explaining, and shaping, the embedding of new practices. To extend the practical utility of NPT for improving implementation success, an instrument (NoMAD) was developed and validated. METHODS: Descriptive analysis and psychometric testing of an instrument developed by the authors, through an iterative process that included item generation, consensus methods, item appraisal, and cognitive testing. A 46 item questionnaire was tested in 6 sites implementing health related interventions, using paper and online completion. Participants were staff directly involved in working with the interventions. Descriptive analysis and consensus methods were used to remove redundancy, reducing the final tool to 23 items. Data were subject to confirmatory factor analysis which sought to confirm the theoretical structure within the sample. RESULTS: We obtained 831 completed questionnaires, an average response rate of 39% (range: 22-77%). Full completion of items was 50% (n = 413). The confirmatory factor analysis showed the model achieved acceptable fit (CFI = 0.95, TLI = 0.93, RMSEA = 0.08, SRMR = 0.03). Construct validity of the four theoretical constructs of NPT was supported, and internal consistency (Cronbach's alpha) were as follows: Coherence (4 items, α = 0.71); Collective Action (7 items, α = 0.78); Cognitive Participation (4 items, α = 0.81); Reflexive Monitoring (5 items, α = 0.65). The normalisation scale overall, was highly reliable (20 items, α = 0.89). CONCLUSIONS: The NoMAD instrument has good face validity, construct validity and internal consistency, for assessing staff perceptions of factors relevant to embedding interventions that change their work practices. Uses in evaluating and guiding implementation are proposed.

Employing the arts for knowledge production and translation: Visualizing new possibilities for women speaking up about safety concerns in maternity.

OBJECTIVES: This project used animated film to translate research findings into accessible health information aimed at enabling women to speak up and secure professional help for serious safety concerns during pregnancy and after birth. We tested as proof of concept our use of the arts both as product (knowledge production) and process (enabling involvement). BACKGROUND: Emergencies during pregnancy and birth, while unusual, can develop rapidly and unexpectedly, with catastrophic consequences. Women's tacit knowledge of changes in their condition is an important resource to aid early detection, but women can worry about the legitimacy of their concerns and struggle to get these taken seriously by staff. DESIGN: Arts-based knowledge translation. A user group of women who had experienced complications in the perinatal period (n = 34) helped us develop and pilot test the animation. Obstetricians and midwives (15), clinical leads (3) and user group representatives (8) helped with the design and testing. FINDINGS: The consultation process, script and storyboard enabled active interaction with the evidence, meaningful engagement with stakeholders and new understandings about securing help for perinatal complications. The method enabled us to address gender stereotypes and social norms about speaking up and embed a social script for women within the animation, to help structure their help seeking. While for some women, there was an emotional burden, the majority were glad to have been part of the animation's development and felt it had enabled their voices to be heard. CONCLUSION: This project has demonstrated the benefits of arts-science collaborations for meaningful co-production and effective translation of research evidence.

A narrative synthesis of factors that affect women speaking up about early warning signs and symptoms of pre-eclampsia and responses of healthcare staff.

BACKGROUND: One of the challenges for treating pre-eclampsia and preventing further deterioration is determining how best to enable early detection. If women or their partners and families are able to raise early warnings about potential signs and symptoms of pre-eclampsia in pregnancy, birth and in the postnatal period, women may be able to receive earlier intervention to prevent severe pre-eclampsia from developing. The aim of this study was to improve understanding of factors affecting the ability of women to recognise symptoms and signs of pre-eclampsia/eclampsia and seek appropriate medical help and factors affecting health care professionals' responses to women and their families who 'speak up' about early warning signs and symptoms. METHODS: A narrative synthesis was conducted of evidence relevant to address the research question. The following electronic data bases were searched for qualitative studies which met inclusion criteria from January 1980 to April 2016; Medline, CINAHL, HMIC, PsycINFO, Embase, BNI, ASSIA, Scopus, Maternity and Infant Care, Web of Science, Google Scholar, Cochrane, JBI and IBSS with the support of an Information Service Consultant. RESULTS: Following thematic analysis, three themes were identified; 1: Women's understanding and knowledge of pre-eclampsia/eclampsia; 2: Factors affecting help seeking behaviour from perspectives of women and their families'; 3: Factors affecting staff response. There was widespread lack of knowledge and understanding of signs and symptoms of pre-eclampsia/eclampsia among women and their families, with some women not exhibiting signs and symptoms of pre-eclampsia or unable to distinguish them from 'normal' pregnancy changes. CONCLUSIONS: Women and their families not only need to be made aware of signs and symptoms of pre-eclampsia/eclampsia but also require information on the most effective ways to seek urgent medical assessment and care. Some women did not experience prodromal signs and symptoms, which raises concerns about how women and families can detect early onset, and is an issue which needs further exploration. There is very limited research exploring clinical staff response to women who raise concerns about their health when experiencing symptoms and signs of pre-eclampsia/eclampsia with further research needed if safety and quality of care are to be improved.

Working for patient safety: a qualitative study of women's help-seeking during acute perinatal events.

BACKGROUND: Women and their relatives can play an important role in early detection and help seeking for acute perinatal events. Recent UK reports indicate that patient-professional partnership in 'working for safety' can be difficult to achieve in practice, sometimes with catastrophic consequences. This research explored the experiences of women and relatives who had experienced early warning signs about their condition and sought help in escalating care. METHODS: Secondary analysis of case study data which included qualitative interviews with 22 women purposively sampled on account of experiencing a step up in care and 4 of their relatives from two NHS Trusts in England during 2010. Analysis focused on the type of safety work participants engaged in, and the opportunities and challenges reported by women and family members when negotiating safety at home and in hospital. RESULTS: Women and relatives took on a dual responsibility for self-diagnosis, self-care and seeking triage, whilst trying to avoid overburdening stretched services. Being informed, however, did not necessarily enable engagement from staff and services. The women's narratives highlighted the work that they engaged in to build a case for clinical attention, the negotiations that took place with health care professionals and the strategies women and partners drew on (such as objective signs and symptoms, use of verbal insistence and repetition) to secure clinical help. For some women, the events left them with a lasting feeling that their concerns had been disregarded. Some described a sense of betrayal and loss of trust in an institution they believed had failed to care for them. CONCLUSION: The notion of 'safety partnerships' which suggests a sense of equality and reciprocity was not borne out by our data, especially with regards to the experiences of teenage women. To enable women and families to secure a rapid response in clinical emergencies, strategies need to move beyond the provision of patient information about warning signs. Effective partnerships for safety may be supported by system level change such as improved triage, continuity of care, self-referral pathways and staff training to address asymmetries of power that persist within the health system.

The social practice of rescue: the safety implications of acute illness trajectories and patient categorisation in medical and maternity settings.

The normative position in acute hospital care when a patient is seriously ill is to resuscitate and rescue. However, a number of UK and international reports have highlighted problems with the lack of timely recognition, treatment and referral of patients whose condition is deteriorating while being cared for on hospital wards. This article explores the social practice of rescue, and the structural and cultural influences that guide the categorisation and ordering of acutely ill patients in different hospital settings. We draw on Strauss et al.'s notion of the patient trajectory and link this with the impact of categorisation practices, thus extending insights beyond those gained from emergency department triage to care management processes further downstream on the hospital ward. Using ethnographic data collected from medical wards and maternity care settings in two UK inner city hospitals, we explore how differences in population, cultural norms, categorisation work and trajectories of clinical deterioration interlink and influence patient safety. An analysis of the variation in findings between care settings and patient groups enables us to consider socio-political influences and the specifics of how staff manage trade-offs linked to the enactment of core values such as safety and equity in practice.

The role of patients and their relatives in 'speaking up' about their own safety - a qualitative study of acute illness.

BACKGROUND: Poor recognition of and response to acute illness in hospitalized patients continues to cause significant harm despite the implementation of safety strategies such as early warning scores. Patients and their relatives may be able to contribute to their own safety by speaking up about changes in condition, but little is known about the factors that influence this. This study examined the experiences and views of patients and their relatives to determine the potential for involvement in promoting their own safety. METHODS: This data set is drawn from a wider ethnographic study of the management of the acutely ill patient in hospital. Thirteen patients and seven relatives from two medical settings in two UK NHS Trusts were interviewed. Thematic analysis identified factors likely to influence patients' and their relatives' ability to contribute to the management of deterioration. RESULTS: All patients interviewed had experienced their acute illness within the context of a long-term health problem. Speaking up was influenced by the ability to recognize changes in clinical condition, self-monitoring, confidence and trust, and culture and system of health care. When patients or relatives did raise concerns, health-care staff had a mediating effect on their comfort with and the effectiveness of speaking up. IMPLICATIONS: Safety strategies based on patient involvement must take account of the complexities of acute illness. Those that promote partnership may be more acceptable to patients, their families and staff than those that promote challenging behaviour and may ultimately prove to be most safe and effective.

Perinatal health outcomes of women from Gypsy, Roma and Traveller communities: A systematic review.

BACKGROUND: GRT communities are disadvantaged minority groups in Europe and experience some of the poorest health outcomes, including maternal and child health. This systematic review aimed to assess the maternal, perinatal and infant health outcomes of women from GRT communities and the factors associated with the reported outcomes. METHODS: Database searches were conducted from inception to June 2023 in 4 bibliographic databases supplemented with an additional Google Scholar search. Studies with quantitative data on maternal outcomes published in English were considered. A narrative synthesis was performed, and data were presented in text, figures and tables. FINDINGS: Forty-five studies from 13 European countries were included. Outcome factors related to mothers showing low healthcare engagement, high fertility rates and shorter gestation periods among GRT women. Child wantedness was also noted to influence pregnancy completeness, which included abortion and miscarriage. More negative infant outcomes were seen in GRT infants than non-GRT infants; this included higher preterm births, lower birth weight, higher rates of intrauterine growth restriction and infant mortality. Risk factors of poorer maternal outcomes were early reproduction, education, smoking, alcohol consumption, deprivation, poor nutrition and perinatal care. CONCLUSION: This review provides evidence that GRT women and children experience more negative outcomes than general populations. It also highlights the gaps in ethnicity and health inequalities more broadly. The significant importance of this research is the need for increased focus on reducing health inequalities, especially among the GRT community.

Understanding the enablers and barriers to implementing a patient-led escalation system: a qualitative study.

BACKGROUND: The management of acute deterioration following surgery remains highly variable. Patients and families can play an important role in identifying early signs of deterioration but effective contribution to escalation of care can be practically difficult to achieve. This paper reports the enablers and barriers to the implementation of patient-led escalation systems found during a process evaluation of a quality improvement programme Rescue for Emergency Surgery Patients Observed to uNdergo acute Deterioration (RESPOND). METHODS: The research used ethnographic methods, including over 100 hours of observations on surgical units in three English hospitals in order to understand the everyday context of care. Observations focused on the coordination of activities such as handovers and how rescue featured as part of this. We also conducted 27 interviews with a range of clinical and managerial staff and patients. We employed a thematic analysis approach, combined with a theoretically focused implementation coding framework, based on Normalisation Process Theory. RESULTS: We found that organisational infrastructural support in the form of a leadership support and clinical care outreach teams with capacity were enablers in implementing the patient-led escalation system. Barriers to implementation included making changes to professional practice without discussing the value and legitimacy of operationalising patient concerns, and ensuring equity of use. We found that organisational work is needed to overcome patient fears about disrupting social and cultural norms. CONCLUSIONS: This paper reveals the need for infrastructural support to facilitate the implementation of a patient-led escalation system, and leadership support to normalise the everyday process of involving patients and families in escalation. This type of system may not achieve its goals without properly understanding and addressing the concerns of both nurses and patients.