"They seemed to be like cogs working in different directions": a longitudinal qualitative study on Long COVID healthcare services in the United Kingdom from a person-centred lens.

BACKGROUND: The COVID-19 pandemic has presented significant challenges to the already over-stretched healthcare system in the United Kingdom (UK). These challenges are particularly pronounced for people living with the novel condition of Long COVID (LC) as they often face persistent and fluctuating symptoms, encountering prolonged uncertainty when seeking medical support. Despite a growing understanding of the healthcare challenges associated with LC, existing qualitative studies have predominantly focused on individual experiences rather than examining the structural aspects of healthcare. METHODS: A longitudinal qualitative study with 80 participants and 12 healthcare practitioners was conducted in the UK to explore the healthcare experiences of those with LC. In total, 178 interviews (with attrition) were collected across two rounds, from November 2021 to March 2022, and from June to October 2022. RESULTS: Embracing a person-centred framework that recognises and nurtures interconnected individual, relational, and existential needs, we investigated healthcare experiences related to LC across primary, secondary, and specialist integrated care. Using this perspective, we identified three overarching themes. Theme 1 addresses the persistent hurdle of accessing primary care as the initial point of contact for LC healthcare; Theme 2 underscores the complexity of navigating secondary care; and Theme 3 encapsulates the distinctive challenges of developing LC integrated care. These themes are interlinked, as people with LC often had to navigate or struggle between the various systems, with practitioners seeking to collaborate across the breadth of their professional responsibilities. CONCLUSION: From a person-centred approach, we were able to identify the needs of those affected by lasting LC symptoms and comprehend how health services intricately influence these needs. The focus on healthcare systems also captures the nuanced impact that continuing healthcare struggles can have on people's identity. As such, our findings provide evidence to inform a more effective and sustainable delivery of person-centred care for people with LC across various healthcare settings and over time.

Bathing Adaptations in the Homes of Older Adults (BATH-OUT-2): study protocol for a randomised controlled trial, economic evaluation and process evaluation.

BACKGROUND: The onset of disability in bathing is particularly important for older adults as it can be rapidly followed by disability in other daily activities; this may represent a judicious time point for intervention in order to improve health, well-being and associated quality of life. An important environmental and preventative intervention is housing adaptation, but there are often lengthy waiting times for statutory provision. In this randomised controlled trial (RCT), we aim to evaluate the effectiveness and cost-effectiveness of bathing adaptations compared to no adaptations and to explore the factors associated with routine and expedited implementation of bathing adaptations. METHODS: BATH-OUT-2 is a multicentre, two-arm, parallel-group RCT. Adults aged 60 and over who are referred to their local authority for an accessible level access shower will be randomised, using pairwise randomisation, 1:1, to receive either an expedited provision of an accessible shower via the local authority or a usual care control waiting list. Participants will be followed up for a maximum of 12 months and will receive up to four follow-ups in this duration. The primary outcome will be the participant's physical well-being, assessed by the Physical Component Summary score of the Short Form-36 (SF-36), 4 weeks after the intervention group receives the accessible shower. The secondary outcomes include the Mental Component Summary score of the SF-36, self-reported falls, health and social care resource use, health-related quality of life (EQ-5D-5L), social care-related quality of life (Adult Social Care Outcomes Toolkit (ASCOT)), fear of falling (Short Falls Efficacy Scale), independence in bathing (Barthel Index bathing question), independence in daily activities (Barthel Index) and perceived difficulty in bathing (0-100 scale). A mixed-methods process evaluation will comprise interviews with stakeholders and a survey of local authorities with social care responsibilities in England. DISCUSSION: The BATH-OUT-2 trial is designed so that the findings will inform future decisions regarding the provision of bathing adaptations for older adults. This trial has the potential to highlight, and then reduce, health inequalities associated with waiting times for bathing adaptations and to influence policies for older adults. TRIAL REGISTRATION: ISRCTN Registry ISRCTN48563324. Prospectively registered on 09/04/2021.

'I am just a shadow of who I used to be'-Exploring existential loss of identity among people living with chronic conditions of Long COVID.

Identity loss and (re)construction forms a central debate in sociology of chronic illness. Living with chronic/persistent health conditions may raise questions about how disruptions can touch upon and further threaten the very roots of existence, by which people reflexively perceive a coherent and stable sense of 'being-in-the-world'. Whilst medical sociologists have shown interest in 'existential loss' in chronic illness, this question remains largely underexplored. Adopting a qualitative study on Long COVID (LC) as an example, this article illuminates existential identity loss as a deeply painful experience of losing body as a fundamental medium to retain continuity and consistency of one's narratively constructed identity. Interviews with 80 LC sufferers in the UK revealed that living with persistent and often uncertain symptoms and disruptions can cause the loss of biographical resources and resilience, making it difficult to reflexively understand their own being within the world. Their dynamic responses to LC also highlighted how sufferers' longing for a narratively coherent self can profoundly shape the ongoing construction of their identity in chronic health conditions. These insights into the complicated and often hard-to-express existential pain of identity loss can also nurture more holistic understandings of and support for LC and chronic illness more broadly.

Understanding the impact of Covid-19 on the delivery and receipt of prison healthcare: an international scoping review.

BACKGROUND: People being held in prison are particularly vulnerable to Covid-19 infection, as places of detention are high-risk environments for spread of infection. Due to this risk, many prisons across the globe introduced measures to reduce the risk of Covid-19 transmission. The pandemic changed almost all aspects of prison life, including prison healthcare provision. We undertook a scoping review to understand what is known about the impact of the Covid-19 pandemic on the receipt and delivery of prison healthcare. This scoping review is part of a wider mixed-methods study focusing more specifically on the impact that Covid-19 had on prison healthcare delivery in England. METHODS: We conducted an international scoping review of peer-reviewed articles published between December 2019 and January 2022, across six electronic databases. We also conducted a hand search of key journals and the reference lists of included articles. RESULTS: Twelve articles met our inclusion criteria. The articles focused primarily on prisons in high-income countries and mostly explored the impact that the pandemic had on the provision of drug treatment services. Some aspects of drug treatment services were more impacted than others, with those delivered by external providers and preparations for release particularly hindered. Whilst prison mental health services were purportedly available, there were changes regarding how these were delivered, with group therapies suspended and most consultations taking place using telehealth. The articles reported both digital and non-digital adaptations or innovations to prison healthcare services to ensure continued delivery. Collaboration between different agencies, such as the prison itself, healthcare providers, and non-governmental organisations, was key to facilitating ongoing provision of healthcare to people in prison. CONCLUSIONS: Covid-19 impacted on prison healthcare internationally, but different treatment services were affected in disparate ways, both within and between countries. The published literature concentrates on the impact on drug treatment services. Prison healthcare providers rapidly adapted their processes to attempt to maintain service provision.

Evaluating an intervention to improve the safety and experience of transitions from hospital to home for older people (Your Care Needs You): a protocol for a cluster randomised controlled trial and process evaluation.

BACKGROUND: Older patients often experience safety issues when transitioning from hospital to home. The 'Your Care Needs You' (YCNY) intervention aims to support older people to 'know more' and 'do more' whilst in hospital so that they are better prepared for managing at home. METHODS: A multi-centre cluster randomised controlled trial (cRCT) will evaluate the effectiveness and cost-effectiveness of the YCNY intervention. Forty acute hospital wards (clusters) in England from varying medical specialities will be randomised to deliver YCNY or care-as-usual on a 1:1 basis. The primary outcome will be unplanned hospital readmission rates within 30 days of discharge. This will be extracted from routinely collected data of at least 5440 patients (aged 75 years and older) discharged to their own homes during the 4- to 5-month YCNY intervention period. A nested cohort of up to 1000 patients will be recruited to the study to collect secondary outcomes via follow-up questionnaires at 5-, 30- and 90-day post-discharge. These will include measures of patient experience of transitions, patient-reported safety events, quality of life and healthcare resource use. Unplanned hospital readmission rates at 60 and 90 days of discharge will be collected from routine data. A process evaluation (primarily interviews and observations with patients, carers and staff) will be conducted to understand the implementation of the intervention and the contextual factors that shape this, as well as the intervention's underlying mechanisms of action. Fidelity of intervention delivery will also be assessed across all intervention wards. DISCUSSION: This study will establish the effectiveness and cost-effectiveness of the YCNY intervention which aims to improve patient safety and experience for older people during transitions of care. The process evaluation will generate insights about how the YCNY intervention was implemented, what elements of the intervention work and for whom, and how to optimise its implementation so that it can be delivered with high fidelity in routine service contexts. TRIAL REGISTRATION: UK Clinical Research Network Portfolio: 44559; ISTCRN: ISRCTN17062524. Registered on 11/02/2020.

Understanding the organisational influences on the quality of and access to primary care in English prisons: a qualitative interview study.

BACKGROUND: Primary care for routine healthcare conditions is delivered to thousands of people in the English prison estate every day but the prison environment presents unique challenges to the provision of high-quality health care. Little research has focused on the organisational factors that affect quality of and access to prison health care. AIM: To understand key influences on the quality of primary care in prisons. DESIGN AND SETTING: This was a qualitative interview study across the North of England from 2019 to 2021. METHOD: Interviews were undertaken with 43 participants: 21 prison leavers and 22 prison healthcare professionals. Reflexive thematic analysis was undertaken. RESULTS: The overarching organisational issue influencing quality and access was that of chronic understaffing coupled with a workforce in flux and dependence on locum staff. This applied across different prisons, roles, and grades of staff, and was vocally discussed by both patient and staff participants. Intricately related to understaffing (and fuelled by it) was the propensity for a reactive and sometimes crisis-led service to develop that was characterised by continual firefighting. A persistent problem exacerbated by the above issues was unreliable communication about healthcare matters within some prisons, creating frustration. Positive commentary focused on the characteristics and actions of individual healthcare professionals. CONCLUSION: This study highlights understaffing and its consequences as the most significant threat to the quality of and access to prison primary care. Strategies to address health care affecting prison populations urgently need to consider staffing. This issue should receive high-profile and mainstream attention to address health inequalities.

The quality of prison primary care: cross-sectional cluster-level analyses of prison healthcare data in the North of England.

Background: Prisoners have significant health needs, are relatively high users of healthcare, and often die prematurely. Strong primary care systems are associated with better population health outcomes. We investigated the quality of primary care delivered to prisoners. Methods: We assessed achievement against 30 quality indicators spanning different domains of care in 13 prisons in the North of England. We conducted repeated cross-sectional analyses of routinely recorded data from electronic health records over 2017-20. Multi-level mixed effects logistic regression models explored associations between indicator achievement and prison and prisoner characteristics. Findings: Achievement varied markedly between indicators, prisons and over time. Achieved processes of care ranged from 1% for annual epilepsy reviews to 94% for blood pressure checks in diabetes. Intermediate outcomes of care ranged from only 0.2% of people with epilepsy being seizure-free in the preceding year to 34% with diabetes having sufficient blood pressure control. Achievement improved over three years for 11 indicators and worsened for six, including declining antipsychotic monitoring and rising opioid prescribing. Achievement varied between prisons, e.g., 1.93-fold for gabapentinoid prescribing without coded neuropathic pain (odds ratio [OR] range 0.67-1.29) and 169-fold for dried blood spot testing (OR range 0.05-8.45). Shorter lengths of stay were frequently associated with lower achievement. Ethnicity was associated with some indicators achievement, although the associations differed (both positive and negative) with indicators. Interpretation: We found substantial scope for improvement and marked variations in quality, which were largely unaltered after adjustment for prison and prisoner characteristics. Funding: National Institute for Health and Care Research Health and Social Care and Delivery Research Programme: 17/05/26.

'Trying to battle a very slow version of the system that exists outside': Experiences of waiting for healthcare in English prisons.

Prison has been described as the ultimate form of time-punishment - a place where time is no longer a commodity for individuals to spend, but is ordered by a system which symbolises its power through the control of segments of people's lives. As such, a prison sentence epitomises the experience of waiting. Yet anticipating release is not the only form of waiting within carceral life; waiting for healthcare in its various forms also shapes people's temporal experience. Drawing on interviews with 21 people who have lived in prison, this article describes how experiences of waiting for healthcare are mediated by expectation or hope, perceptions of the relationship between behaviour and healthcare access, and the consequences of waiting for care. Constraints on the autonomy of people in prison mean that waiting for healthcare differs in important ways from waiting for healthcare in the community, and can be perceived as an additional form of punishment. The experience of waiting for prison healthcare can affect physical and psychological well-being, and can in itself be understood as a pain of imprisonment.

Being pregnant and becoming a parent during the COVID-19 pandemic: a longitudinal qualitative study with women in the Born in Bradford COVID-19 research study.

BACKGROUND: Uncertainty around the risk of COVID-19 to pregnant women and their babies prompted precautionary restrictions on their health and care during the pandemic. Maternity services had to adapt to changing Government guidance. Coupled with the imposition of national lockdowns in England and restrictions on daily activities, women's experiences of pregnancy, childbirth and the postpartum period, and their access to services, changed rapidly. This study was designed to understand women's experiences of pregnancy, labour and childbirth and caring for a baby during this time. METHODS: This was an inductive longitudinal qualitative study, using in-depth interviews by telephone with women in Bradford, UK, at three timepoints during their maternity journey (18 women at timepoint one, 13 at timepoint two and 14 at timepoint three). Key topics explored were physical and mental wellbeing, experience of healthcare services, relationships with partners and general impact of the pandemic. Data were analysed using the Framework approach. A longitudinal synthesis identified over-arching themes. RESULTS: Three longitudinal themes captured what was important to women: (1) women feared being alone at critical points in their maternity journey, (2) the pandemic created new norms for maternity services and women's care, and (3) finding ways to navigate the COVID-19 pandemic in pregnancy and with a baby. CONCLUSIONS: Modifications to maternity services impacted significantly on women's experiences. The findings have informed national and local decisions about how best to direct resources to reduce the impact of COVID-19 restrictions and the longer-term psychological impact on women during pregnancy and postnatally.

Meta-evaluation of a whole systems programme, ActEarly: A study protocol.

INTRODUCTION: Living in an area with high levels of child poverty predisposes children to poorer mental and physical health. ActEarly is a 5-year research programme that comprises a large number of interventions (>20) with citizen science and co-production embedded. It aims to improve the health and well-being of children and families living in two areas of the UK with high levels of deprivation; Bradford in West Yorkshire, and the London Borough of Tower Hamlets. This protocol outlines the meta-evaluation (an evaluation of evaluations) of the ActEarly programme from a systems perspective, where individual interventions are viewed as events in the wider policy system across the two geographical areas. It includes investigating the programme's impact on early life health and well-being outcomes, interdisciplinary prevention research collaboration and capacity building, and local and national decision making. METHODS: The ActEarly meta-evaluation will follow and adapt the five iterative stages of the 'Evaluation of Programmes in Complex Adaptive Systems' (ENCOMPASS) framework for evaluation of public health programmes in complex adaptive systems. Theory-based and mixed-methods approaches will be used to investigate the fidelity of the ActEarly research programme, and whether, why and how ActEarly contributes to changes in the policy system, and whether alternative explanations can be ruled out. Ripple effects and systems mapping will be used to explore the relationships between interventions and their outcomes, and the degree to which the ActEarly programme encouraged interdisciplinary and prevention research collaboration as intended. A computer simulation model ("LifeSim") will also be used to evaluate the scale of the potential long-term benefits of cross-sectoral action to tackle the financial, educational and health disadvantages faced by children in Bradford and Tower Hamlets. Together, these approaches will be used to evaluate ActEarly's dynamic programme outputs at different system levels and measure the programme's system changes on early life health and well-being. DISCUSSION: This meta-evaluation protocol presents our plans for using and adapting the ENCOMPASS framework to evaluate the system-wide impact of the early life health and well-being programme, ActEarly. Due to the collaborative and non-linear nature of the work, we reserve the option to change and query some of our evaluation choices based on the feedback we receive from stakeholders to ensure that our evaluation remains relevant and fit for purpose.

"It was really poor prior to the pandemic. It got really bad after": A qualitative study of the impact of COVID-19 on prison healthcare in England.

BACKGROUND: The impact of COVID-19 has been exceptional, particularly on the National Health Service which has juggled COVID affected patients alongside related staff shortages and the existing (and growing) health needs of the population. In prisons too, healthcare teams have been balancing patient needs against staffing shortfalls, but with additional strains unique to the prison population. Such strains include drastic lockdown regimes and prolonged isolation, the need to consider health alongside security, known health inequalities within prisoner groups, and an ageing and ethnically diverse population (both groups disproportionately affected by COVID). The aim of this paper is to contribute to emerging research on the impact of COVID-19 on prison healthcare. METHODS: We conducted 44 in depth interviews (over phone or video) across three groups: prison leavers, healthcare staff and decision makers, between July and December 2021. Framework analysis was undertaken. RESULTS: Three themes were found. First, we found that Covid-19 had a significant impact on prison healthcare which involved reduced access and changes to how healthcare was delivered. This affected the health of prisoners by exacerbating existing conditions, new conditions being undiagnosed and mental health needs increasing. Second, the pandemic impacted on healthcare staff through creation of stress, frustration and exhaustion due to minimal staffing levels in an already under-resourced system. Third, an emerging conflict was witnessed. People in prison felt neglected regarding their healthcare needs but staff reported doing the best they could in an unprecedented situation. Healthcare staff and decision makers felt that prison healthcare was seen as a poor relation when compared with healthcare in the community, with no extra resource or staffing for Covid-19 testing or vaccinations. CONCLUSION: The Covid-19 pandemic has significantly impacted almost all aspects of prison healthcare in the UK. This includes delivery of healthcare by staff, receipt of it by people in prison and the management, planning and commissioning of it by decision makers. These three groups of people were all affected detrimentally but in vastly different ways, with some participants describing a sense of trauma. Health needs that were exacerbated or went unmet during Covid urgently need to be addressed in order to reduce health inequalities. In order for welfare and wellbeing to be maintained, and in some cases repaired, both prisoners and staff need to feel heard and recognised.

A glimpse behind the organisational curtain: A dramaturgical analysis exploring the ways healthcare staff engage with online patient feedback 'front' and 'backstage' at three hospital Trusts in England.

Healthcare staff are encouraged to use feedback from their patients to inform service and quality improvement. Receiving patient feedback via online channels is a relatively new phenomenon that has rarely been conceptualised. Further, the implications of a wide, varied and unknown(able) audience being able to view and interact with online patient feedback are yet to be understood. We applied a theoretical lens of dramaturgy to a large ethnographic dataset, collected across three NHS Trusts during 2019/2020. We found that organisations demonstrated varying levels of 'preparedness to perform' online, from invisibility through to engaging in public conversation with patients within a wider mission for transparency. Restrictive 'cast lists' of staff able to respond to patients was the hallmark of one organisation, whereas another devolved responding responsibility amongst a wide array of multidisciplinary staff. The visibility of patient-staff interactions had the potential to be culturally disruptive, dichotomously invoking either apprehensions of reputational threat or providing windows of opportunity. We surmise that a transparent and conversational feedback response frontstage aligns with the ability to better prioritise backstage improvement. Legitimising the autonomous frontstage activity of diverse staff groups may help shift organisational culture, and gradually ripple outwards a shared responsibility for transparent improvement.

Compliant citizens, defiant rebels or neither? Exploring change and complexity in COVID-19 vaccine attitudes and decisions in Bradford, UK: Findings from a follow-up qualitative study.

BACKGROUND: COVID-19 vaccines have been the central pillar of the public health response to the pandemic, intended to enable us to 'live with Covid'. It is important to understand change and complexity of COVID-19 vaccines attitudes and decisions to maximize uptake through an empathetic lens. OBJECTIVE: To explore the factors that influenced people's COVID-19 vaccines decisions and how their complex attitudes towards the vaccines had changed in an eventful year. DESIGN AND PARTICIPANTS: This is a follow-up study that took place in Bradford, UK between October 2021 and January 2022, 1 year after the original study. In-depth phone interviews were conducted with 12 (of the 20 originally interviewed) people from different ethnic groups and areas of Bradford. Reflexive thematic analysis was conducted. RESULTS: Eleven of the 12 participants interviewed had received both doses of the COVID-19 vaccine and most intended to have a booster dose. Participants described a variety of reasons why they had decided to have the vaccines, including the following: feeling at increased risk at work; protecting family and others in their communities; unrestricted travel and being influenced by the vaccine decisions of family, friends and colleagues. All participants discussed ongoing interaction with COVID-19 misinformation and for some, this meant they were uneasy about their decision to have the vaccine. They described feeling overloaded by and disengaged from COVID-19 information, which they often found contradictory and some felt mistrustful of the UK Government's motives and decisions during the pandemic. CONCLUSIONS: The majority of participants had managed to navigate an overwhelming amount of circulating COVID-19 misinformation and chosen to have two or more COVID-19 vaccines, even if they had been previously said they were unsure. However, these decisions were complicated, demonstrating the continuum of vaccine hesitancy and acceptance. This follow-up study underlines that vaccine attitudes are changeable and contextual. PATIENT OR PUBLIC CONTRIBUTION: The original study was developed through a rapid community and stakeholder engagement process in 2020. Discussion with the Bradford Council Public Health team and the public through the Bradford COVID-19 Community Insights Group was undertaken in 2021 to identify important priorities for this follow-up study.

'I don't know what to do or where to go'. Experiences of accessing healthcare support from the perspectives of people living with Long Covid and healthcare professionals: A qualitative study in Bradford, UK.

BACKGROUND: In October 2022, it was estimated 2.3 million people in the United Kingdom have self-reported Long Covid (LC). Many people have reported not receiving adequate healthcare support. There is a lack of research which provides an in-depth exploration of the barriers faced by people with LC in accessing healthcare support. It is important to understand these barriers to provide better support, care and advice for those experiencing LC. OBJECTIVE: To understand the barriers faced in accessing primary, secondary and specialist healthcare support for people with LC. DESIGN AND PARTICIPATION: 40 interviews were conducted with people living with LC in Bradford alongside 12 interviews with healthcare professionals (HCPs) providing LC support in Bradford healthcare settings. Interviews were analysed using reflexive thematic analysis. RESULTS: People living with LC had a large degree of difficulty in accessing healthcare services for LC support. We categorized the healthcare access experiences of participants into five main types: (1) being unable to access primary care, (2) accessing primary care but receiving (perceived) inadequate support, (3) extreme persistence, (4) alternatives to mainstream health care and (5) positive experiences. There was a severe lack of access to specialist LC services. Ethnic minority participants faced a further barrier of mistrust and fear of services deterring them from accessing support. HCPs discussed systemic barriers to delivering services. Experiences were embedded in macrostructural issues further exacerbated by the pandemic. CONCLUSION: To better support people with LC, the barriers faced in accessing healthcare support must be addressed. Of significance, improvements to general practitioner access are required; especially as GPs are the first line of support for people living with LC. PATIENT AND PUBLIC INVOLVEMENT: A patient and public involvement group is engaged at regular intervals in the project.

The feasibility and acceptability of implementing video reflexive ethnography (VRE) as an improvement tool in acute maternity services.

BACKGROUND: Video-reflexive ethnography (VRE) has been argued to be an alternative approach to collaborative learning in healthcare teams, more able to capture the complexities of the healthcare environment than simulation. This study aims to explore the feasibility and acceptability of employing VRE as an improvement tool in acute maternity services. METHOD: Focused ethnography and semi-structured interviews (n = 17) explored the feasibility of employing VRE from the perspective of the researcher-facilitator, and that of the healthcare staff participants. Reflexive thematic analysis was used to generate key themes. RESULTS: We identified four themes related to feasibility of employing VRE as an improvement approach: laying the groundwork; challenges of capturing in-situ video footage; effective facilitation of reflexive feedback; and, power to change. Of note was the central role of the facilitator in building and maintaining staff trust in the process, particularly in being able to guide collaborative, non-punitive discussion during reflexive feedback sessions. Interestingly, when considering implementation of change, structural hierarchies were evident with more senior staff better able to develop and effect ideas. Two themes related to acceptability of VRE among healthcare staff were identified: staff response to the role of VRE in improvement; and the power of a different perspective. Staff were overwhelmingly positive about their experience of VRE, particularly appreciating the time, space and autonomy it afforded them to navigate and articulate ideas for change and improvement. CONCLUSION: VRE is both feasible and acceptable as an improvement tool with acute, multi-disciplinary maternity staff teams. It is an important healthcare improvement tool that could prompt the development and maintenance of team resilience factors in the face of increasing stress and burn-out of healthcare staff in maternity services.

Exploring the sociocultural contexts in which healthcare staff respond to and use online patient feedback in practice: In-depth case studies of three NHS Trusts.

Objectives: Patients are increasingly reporting about their healthcare experiences online and NHS Trusts are adopting different approaches to responding. However, the sociocultural contexts underpinning these organisational approaches remain unclear. Therefore, we aimed to explore the sociocultural contexts underpinning three organisations who adopted different approaches to responding to online patient feedback. Methods: Recruitment of three NHS Trusts was theoretically guided, and determined based on their different approaches to responding to online patient feedback (a nonresponding organisation, a generic responding organisation and an organisation providing transparent, conversational responses). Ethnographic methods were used during a year of fieldwork involving staff interviews, observations of practice and documentary analysis. Three in-depth case studies are presented. Findings: The first organisation did not respond to or use online patient feedback as staff were busy firefighting volumes of concerns received in other ways. The second organisation adopted a generic responding style due to resource constraints, fears of public engagement and focus on resolving known issues raised via more traditional feedback sources. The final organisation provided transparent, conversational responses to patients online and described a 10-year journey enabling their desired culture to be embedded. Conclusions: We identified a range of barriers facing organisations who ignore or provide generic responses to patient feedback online. We also demonstrated the sociocultural context in which online interactions between staff and patients can be embraced to inform improvement. However, this represented a slow and difficult organisational journey. Further research is needed to better establish how organisations can recognise and overcome barriers to engaging with online patient feedback, and at pace.

Improving the safety and experience of transitions from hospital to home: a cluster randomised controlled feasibility trial of the 'Your Care Needs You' intervention versus usual care.

BACKGROUND: The 'Your Care Needs You' (YCNY) intervention aims to increase the safety and experience of transitions for older people through greater patient involvement during the hospital stay. METHODS: A cluster randomised controlled feasibility trial was conducted on NHS inpatient wards (clusters) where ≥ 40% of patients were routinely ≥ 75 years. Wards were randomised to YCNY or usual care using an unequal allocation ratio (3:2). We aimed to recruit up to 20 patients per ward. Follow-up included routine data collection and questionnaires at 5-, 30-, and 90-days post-discharge. Eligible patients were ≥ 75 years, discharged home, stayed overnight on participating wards, and could read and understand English. The trial assessed the feasibility of delivering YCNY and the trial methodology through recruitment rates, outcome completion rates, and a qualitative evaluation. The accuracy of using routinely coded data for the primary outcome in the definitive trial was assessed by extracting discharge information for up to ten nonindividual consenting patients per ward. RESULTS: Ten wards were randomised (6 intervention, 4 control). One ward withdrew, and two wards were unable to deliver the intervention. Seven-hundred twenty-one patients were successfully screened, and 161 were recruited (95 intervention, 66 control). The patient post-discharge attrition rate was 17.4% (n = 28). Primary outcome data were gathered for 91.9% of participants with 75.2% and 59.0% providing secondary outcome data at 5 and 30 days post-discharge respectively. Item completion within questionnaires was generally high. Post-discharge follow-up was terminated early due to the COVID-19 pandemic affecting 90-day response rates (16.8%). Data from 88 nonindividual consenting patients identified an error rate of 15% when using routinely coded data for the primary outcome. No unexpected serious adverse events were identified. Most patients viewed YCNY favourably. Staff agreed with it in principle, but ward pressures and organisational contexts hampered implementation. There was a need to sustain engagement, provide clarity on roles and responsibilities, and account for fluctuations in patients' health, capacity, and preferences. CONCLUSIONS: If implementation challenges can be overcome, YCNY represents a step towards involving older people as partners in their care to improve the safety and experience of their transitions from hospital to home. TRIAL REGISTRATION: ISRCTN: 51154948.

What Do Patients and Their Carers Do to Support the Safety of Cancer Treatment and Care? A Scoping Review.

BACKGROUND: Cancer patients and their carers face a multitude of challenges in the treatment journey; the full scope of how they are involved in promoting safety and supporting resilient healthcare is not known. OBJECTIVE: The study aimed to undertake a scoping review to explore, document, and understand existing research, which explores what cancer patients and their carers do to support the safety of their treatment and care. DESIGN: This scoping review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines. Five online databases were searched from 2000 to 2021 to identify primary literature exploring perspectives on patient and caregiver involvement in maintaining their safety during cancer care. Narrative synthesis was then conducted on the included literature. RESULTS: Of the 1582 results generated from the initial search, 16 studies were included in the review. Most consisted of qualitative semistructured interviews with patients, as well as carers and healthcare professionals (HCP). Four narrative themes were identified: patient perception of safety and their involvement; patients take charge of their own care and well-being; safety as a dynamic collective responsibility; and carers are an undersupported asset. Patients and their carers involve themselves in a variety of behaviors in physical care, well-being, communication, and care coordination to ensure safety and support system resilience. This review adds a novel perspective on cancer patient and caregiver involvement in supporting resilient healthcare. CONCLUSIONS: Patients and their carers play an important role in promoting safe cancer care and healthcare system resilience. Further research is recommended to realize the full extent of the system gaps encountered and mediated by patients and their carers.