Stories for Change: The impact of Public Narrative on the co-production process

INTRODUCTION: Involving service users in health service design and delivery is considered important to improve the quality of healthcare because it ensures that the delivery of healthcare is adapted to the needs of the users. Co-production is a process used to involve service users, but multiple papers have highlighted the need for the mechanisms and values guiding co-production to be more clearly stated. The aim of this paper was to evaluate the mechanisms and values that guided the co-production approach of the Stories for Change project, which used Public Narrative as part of the co-design process to create change in National Health Service maternity services. METHODS: This study was conducted using a rapid feedback evaluation approach. Semistructured interviews (n = 16) were the main source of data, six of which were maternity service users, with observations (5 h) and documentary analysis also carried out in parallel. RREAL sheets were used for data analysis to organize data based on key topics of interest. RESULTS: This study identified three broad mechanisms and values underpinning the co-production approach: creating an open and safe space to share ideas, learning how to tell stories using Public Narrative and having service providers who play a key role in strengthening the health system listen to stories compelling them to action. This study identified the main areas for improvement of the Stories for Change project related to recruitment, the inclusion of participants, the co-design process, the Skills Session and the Learning Event. CONCLUSION: Our study provided a deeper understanding of the co-production approach that addresses the need to uncover the mechanism and values underlying co-production and co-design approaches. This study expands on the literature pertaining to the influence of storytelling in creating meaningful change in health care. We propose a co-design methodology that uses Public Narrative as a model for service user engagement to help inform future healthcare development processes. PATIENT OR PUBLIC CONTRIBUTION: The experiences and perceptions of maternity service users and health professionals informed this evaluation. The project organizers were involved in the manuscript preparation stage by providing feedback, and service users wrote a commentary on the project from the lived experience perspective

Public Sentiment and Discourse on Domestic Violence During the COVID-19 Pandemic in Australia: Analysis of Social Media Posts.

Background: Measuring public response during COVID-19 is an important way of ensuring the suitability and effectiveness of epidemic response efforts. An analysis of social media provides an approximation of public sentiment during an emergency like the current pandemic. The measures introduced across the globe to help curtail the spread of the coronavirus have led to the development of a situation labeled as a “perfect storm,” triggering a wave of domestic violence. As people use social media to communicate their experiences, analyzing public discourse and sentiment on social platforms offers a way to understand concerns and issues related to domestic violence during the COVID-19 pandemic. Objective: This study was based on an analysis of public discourse and sentiment related to domestic violence during the stay-at-home periods of the COVID-19 pandemic in Australia in 2020. It aimed to understand the more personal self-reported experiences, emotions, and reactions toward domestic violence that were not always classified or collected by official public bodies during the pandemic. Methods: We searched social media and news posts in Australia using key terms related to domestic violence and COVID-19 during 2020 via digital analytics tools to determine sentiments related to domestic violence during this period. Results: The study showed that the use of sentiment and discourse analysis to assess social media data is useful in measuring the public expression of feelings and sharing of resources in relation to the otherwise personal experience of domestic violence. There were a total of 63,800 posts across social media and news media. Within these posts, our analysis found that domestic violence was mentioned an average of 179 times a day. There were 30,100 tweets, 31,700 news reports, 1500 blog posts, 548 forum posts, and 7 comments (posted on news and blog websites). Negative or neutral sentiment centered on the sharp rise in domestic violence during different lockdown periods of the 2020 pandemic, and neutral and positive sentiments centered on praise for efforts that raised awareness of domestic violence as well as the positive actions of domestic violence charities and support groups in their campaigns. There were calls for a positive and proactive handling (rather than a mishandling) of the pandemic, and results indicated a high level of public discontent related to the rising rates of domestic violence and the lack of services during the pandemic. Conclusions: This study provided a timely understanding of public sentiment related to domestic violence during the COVID-19 lockdown periods in Australia using social media analysis. Social media represents an important avenue for the dissemination of information; posts can be widely dispersed and easily accessed by a range of different communities who are often difficult to reach. An improved understanding of these issues is important for future policy direction. Heightened awareness of this could help agencies tailor and target messaging to maximize impact

Re-ordering connections: UK healthcare workers' experiences of emotion management during the COVID-19 pandemic

This paper examines the impact of disruptions to the organisation and delivery of healthcare services and efforts to re-order care through emotion management during the COVID-19 pandemic in the UK. Framing care as an affective practice, studying healthcare workers' (HCWs) experiences enables better understanding of how interactions between staff, patients and families changed as a result of the pandemic. Using a rapid qualitative research methodology, we conducted interviews with frontline HCWs in two London hospitals during the peak of the first wave of the pandemic and sourced public accounts of HCWs' experiences of the pandemic from social media (YouTube and Twitter). We conducted framework analysis to identify key factors disrupting caring interactions. Fear of infection and the barriers of physical distancing acted to separate staff from patients and families, requiring new affective practices to repair connections. Witnessing suffering was distressing for staff, and providing a 'good death' for patients and communicating care to families was harder. In addition to caring for patients and families, HCWs cared for each other. Infection control measures were important for limiting the spread of COVID-19 but disrupted connections that were integral to care, generating new work to re-order interactions

Carrying Out Rapid Qualitative Research During a Pandemic: Emerging Lessons From COVID-19

Social scientists have a robust history of contributing to better understandings of and responses to disease outbreaks. The implementation of qualitative research in the context of infectious epidemics, however, continues to lag behind in the delivery, credibility, and timeliness of findings when compared with other research designs. The purpose of this article is to reflect on our experience of carrying out three research studies (a rapid appraisal, a qualitative study based on interviews, and a mixed-methods survey) aimed at exploring health care delivery in the context of COVID-19. We highlight the importance of qualitative data to inform evidence-based public health responses and provide a way forward to global research teams who wish to implement similar rapid qualitative studies. We reflect on the challenges of setting up research teams, obtaining ethical approval, collecting and analyzing data in real-time and sharing actionable findings

Rapid evaluation of service innovations in health and social care: key considerations

Background: The Children and Young People’s Mental Health Trailblazer programme is funding the creation of new mental health support teams to work in schools and further education colleges. Mental health support teams directly support children and young people with ‘mild to moderate’ mental health problems and work with school and college staff to promote well-being for all. A new workforce of education mental health practitioners is being trained for the teams. / Objective(s): The National Institute for Health and Care Research Birmingham, RAND and Cambridge Evaluation Rapid Evaluation Centre and Policy Innovation and Evaluation Research Unit undertook an early evaluation of the Trailblazer programme to examine the development, implementation and early progress of mental health support teams in the programme’s first 25 ‘Trailblazer’ sites. / Design: A mixed-methods evaluation, comprising three work packages: 1. Establishing the baseline and understanding the development and early impacts of the Trailblazer sites, including two rounds of surveys with key informants and participating education settings in all 25 sites. 2. More detailed research in five purposively selected Trailblazer sites, including interviews with a range of stakeholders and focus groups with children and young people. 3. Scoping and developing options for a longer-term assessment of the programme’s outcomes and impacts. Fieldwork was undertaken between November 2020 and February 2022. The University of Birmingham Institute for Mental Health Youth Advisory Group was involved throughout the study, including co-producing the focus groups with children and young people. / Results: Substantial progress had been made implementing the programme, in challenging circumstances, and there was optimism about what it had the potential to achieve. The education mental health practitioner role had proven popular, but sites reported challenges in retaining education mental health practitioners, and turnover left mental health support teams short-staffed and needing to re-recruit. Education settings welcomed additional mental health support and reported positive early outcomes, including staff feeling more confident and having faster access to advice about mental health issues. At the same time, there were concerns about children who had mental health problems that were more serious than ‘mild to moderate’ but not serious enough to be accepted for specialist help, and that the interventions offered were not working well for some young people. Mental health support teams were generally spending more time supporting children with mental health problems than working with education settings to develop ‘whole school’ approaches to mental health and well-being, and service models in some sites appeared to be more clinically oriented, with a strong focus on mental health support teams’ therapeutic functions. / Limitations: Despite efforts to maximise participation, survey response rates were relatively low and some groups were less well represented than others. We were not able to gather sufficiently detailed data to develop a typology of Trailblazer sites, as was planned. / Conclusions: Key lessons for future programme implementation include: – Whether mental health support teams should expand support to children and young people with more complex and serious mental health problems. – How to keep the twin aims of prevention and early intervention in balance. – How to retain education mental health practitioners once trained. / Future work: The findings have important implications for the design of a longer-term impact evaluation of the programme, which is due to commence in summer 2023. / Study registration: Ethical approval from the University of Birmingham (ERN_19-1400 – RG_19-190) and London School of Hygiene and Tropical Medicine (Ref: 18040) and Health Research Authority approval (IRAS 270760). / Funding: The Birmingham, RAND and Cambridge Evaluation Rapid Evaluation Centre is funded by the National Institute for Health and Care Research Health Services and Delivery Research programme (HSDR 16/138/31). The Policy Innovation and Evaluation Research Unit is funded by the NIHR Policy Research Programme (PR-PRU-1217-20602)

Missing the human connection: A rapid appraisal of healthcare workers' perceptions and experiences of providing palliative care during the COVID-19 pandemic.

BACKGROUND: During infectious epidemics, healthcare workers are required to deliver traditional care while facing new pressures. Time and resource restrictions, a focus on saving lives and new safety measures can lead to traditional aspects of care delivery being neglected. AIM: Identify barriers to delivering end-of-life care, describe attempts to deliver care during the COVID-19 pandemic, and understand the impact this had on staff. DESIGN: A rapid appraisal was conducted incorporating a rapid review of policies from the United Kingdom, semi-structured telephone interviews with healthcare workers, and a review of mass print media news stories and social media posts describing healthcare worker's experiences of delivering care during the pandemic. Data were coded and analysed using framework analysis. SETTING/PARTICIPANTS: From a larger ongoing study, 22 interviews which mentioned death or caring for patients at end-of-life, eight government and National Health Service policies affecting end-of-life care delivery, eight international news media stories and 3440 publicly available social media posts were identified. The social media analysis centred around 274 original tweets with the highest reach, engagement and relevance. Incorporating multiple workstreams provided a broad perspective of end-of-life care during the COVID-19 pandemic in the United Kingdom. RESULTS: Three themes were developed: (1) restrictions to traditional care, (2) striving for new forms of care and (3) establishing identity and resilience. CONCLUSIONS: The COVID-19 pandemic prohibited the delivery of traditional care as practical barriers restricted human connections. Staff prioritised communication and comfort orientated tasks to re-establish compassion at end-of-life and displayed resilience by adjusting their goals

The implementation of remote home monitoring models during the COVID-19 pandemic in England.

BACKGROUND: There is a paucity of evidence for the implementation of remote home monitoring for COVID-19 infection. The aims of this study were to identify the key characteristics of remote home monitoring models for COVID-19 infection, explore the experiences of staff implementing these models, understand the use of data for monitoring progress against outcomes, and document variability in staffing and resource allocation. METHODS: This was a multi-site mixed methods study conducted between July and August 2020 that combined qualitative and quantitative approaches to analyse the implementation and impact of remote home monitoring models developed during the first wave of the COVID-19 pandemic in England. The study combined interviews (n = 22) with staff delivering these models across eight sites in England with the collection and analysis of data on staffing models and resource allocation. FINDINGS: The models varied in relation to the healthcare settings and mechanisms used for patient triage, monitoring and escalation. Implementation was embedded in existing staff workloads and budgets. Good communication within clinical teams, culturally-appropriate information for patients/carers and the combination of multiple approaches for patient monitoring (app and paper-based) were considered facilitators in implementation. The mean cost per monitored patient varied from £400 to £553, depending on the model. INTERPRETATION: It is necessary to provide the means for evaluating the effectiveness of these models, for example, by establishing comparator data. Future research should also focus on the sustainability of the models and patient experience (considering the extent to which some of the models exacerbate existing inequalities in access to care)

The integration of rapid qualitative research in clinical trials: reflections from the ward-based goal-directed fluid therapy (GDFT) in acute pancreatitis feasibility trial

Background: There has been an increase in the integration of qualitative studies in randomised controlled trials. The purpose of this article is to reflect on our experience of carrying out a rapid qualitative study during a feasibility trial of goal-directed fluid therapy (GDFT) in patients with acute pancreatitis, including our sharing of emerging findings and the use of these findings by the trial team. / Methods: The study was designed as a rapid feedback evaluation and combined interviews with staff and patients who took part in the trial. / Findings: The rapid qualitative study pointed to common problems in trial recruitment among multiple sites, where lack of engagement of clinical teams across sites might impact negatively on patient recruitment. The article describes how the use of rapid feedback loops can be used as the trial is ongoing to inform changes in implementation. It also covers the potential challenges of working rapidly and collaborative with the trial team. / Conclusions: Rapid feedback evaluations can be used to generate findings across all stages of trial design and delivery. Additional research is required to explore the implementation of this research design in other settings and trial designs

Perioperative Care Pathways in Low- and Lower-Middle-Income Countries: Systematic Review and Narrative Synthesis

BACKGROUND: Safe and effective care for surgical patients requires high-quality perioperative care. In high-income countries (HICs), care pathways have been shown to be effective in standardizing clinical practice to optimize patient outcomes. Little is known about their use in low- and middle-income countries (LMICs) where perioperative mortality is substantially higher. METHODS: Systematic review and narrative synthesis to identify and describe studies in peer-reviewed journals on the implementation or evaluation of perioperative care pathways in LMICs. Searches were conducted in MEDLINE, EMBASE, CINAHL Plus, WHO Global Index, Web of Science, Scopus, Global Health and SciELO alongside citation searching. Descriptive statistics, taxonomy classifications and framework analyses were used to summarize the setting, outcome measures, implementation strategies, and facilitators and barriers to implementation. RESULTS: Twenty-seven studies were included. The majority of pathways were set in tertiary hospitals in lower-middle-income countries and were focused on elective surgery. Only six studies were assessed as high quality. Most pathways were adapted from international guidance and had been implemented in a single hospital. The most commonly reported barriers to implementation were cost of interventions and lack of available resources. CONCLUSIONS: Studies from a geographically diverse set of low and lower-middle-income countries demonstrate increasing use of perioperative pathways adapted to resource-poor settings, though there is sparsity of literature from low-income countries, first-level hospitals and emergency surgery. As in HICs, addressing patient and clinician beliefs is a major challenge in improving care. Context-relevant and patient-centered research, including qualitative and implementation studies, would make a valuable contribution to existing knowledge. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00268-022-06621-x

“Attending to History” in Major System Change in Healthcare in England: Specialist Cancer Surgery Service Reconfiguration

BACKGROUND: The reconfiguration of specialist hospital services, with service provision concentrated in a reduced number of sites, is one example of major system change (MSC) for which there is evidence of improved patient outcomes. This paper explores the reconfiguration of specialist oesophago-gastric (OG) cancer surgery services in a large urban area of England (Greater Manchester, GM), with a focus on the role of history in this change process and how reconfiguration was achieved after previous failed attempts. METHODS: This study draws on qualitative research from a mixed-methods evaluation of the reconfiguration of specialist cancer surgery services in GM. Forty-six interviews with relevant stakeholders were carried out, along with ~160 hours of observations at meetings and the acquisition of ~300 pertinent documents. Thematic analysis using deductive and inductive approaches was undertaken, guided by a framework of 'simple rules' for MSC. RESULTS: Through an awareness of, and attention to, history, leaders developed a change process which took into account previous unsuccessful reconfiguration attempts, enabling them to reduce the impact of potentially challenging issues. Interviewees described attending to issues involving competition between provider sites, change leadership, engagement with stakeholders, and the need for a process of change resilient to challenge. CONCLUSION: Recognition of, and response to, history, using a range of perspectives, enabled this reconfiguration. Particularly important was the way in which history influenced and informed other aspects of the change process and the influence of stakeholder power. This study provides further learning about MSC and the need for a range of perspectives to enable understanding. It shows how learning from history can be used to enable successful change