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c21aafd4-fa4e-48e5-85b7-6fda5c6ab3a5 COMPLETED POST DOCTORAL PROJECT: The career aspirations of nurses working in the research delivery workforce: a cross-sectional survey Chief Investigator: Dr Miriam Avery – University of Southampton and University Hospital Southampton NHS Foundation Trust Organisations Involved: University of Southampton, University Hospital Southampton NHS Foundation Trust. Background: We know that nurse-led research in health and social care is crucial to enable nurses to deliver high quality care based on the best available evidence. Nurse-led research is being generated within higher education institutions and a small number of NHS roles, but nurses remain an under-represented group in health services research. There is a clear capacity problem for nurse-led research. Within the NHS, the largest group of nurses working in research are in research delivery roles. This section of the nursing workforce has experience, skills, and competencies in delivering research within a health and social care environment from start to finish. All these skills are of prime importance when designing and leading a research study. However, as there is little published data on the career aspirations of this group of nurses, the extent to which they have the desire to progress an independent researcher career and build capacity for nurse- led research is unknown. The aim of the study is to undertake an online survey of nurses working in research delivery roles in local acute NHS Trusts to determine the career aspirations of this group of nurses. The study is at a very early stage, with the research proposal and protocol in the process of being developed. We expect the set-up and recruitment phase to be completed by the autumn of 2022. The planned online survey includes questions around the current activities of nurses in research delivery roles, as well as training, skills, competencies, and career aspirations. The findings from the survey will provide much needed data about the aspirations of this group of nurses, which will determine the next phase of this research project. If there is aspiration for independent research amongst a section of this workforce, then there is an urgent need to facilitate progression along this career path. Summary of Findings We found that…. • Respondents: 298 Nurses, midwives and AHP’s in the research delivery workforce completed the survey (43% response rate) about ‘research leader’ career aspirations. •Nearly a quarter ‘aspired’ to be a research leader; around a half ‘might aspire’. •Of those aspiring, most (70%) found it difficult or very difficult. Only around a third were confident of achieving ‘research leader’ within 5 years. • Publications: only 21% had been a named author on a peer-reviewed publication • Funding: Most (81%) had no idea or were uncertain as to where to apply for funding •The factors that most respondents identified would help them achieve this goal were: clearer career paths into research leader roles , more guidance and support in making career choices and more mentorship opportunities . • Conclusion: there appears to be a large number expressing some potential aspiration for leading research within the nurse/midwife/AHP research delivery workforce – is this untapped potential? What did we do with this knowledge? - The knowledge from this study has relevance to academics and the clinical research delivery workforce. - Local communication: Presentation of the findings at University Hospital Southampton Research & Development Quarterly Forum meeting. The audience was mainly Research Delivery staff and management. - International conference: Abstract and poster at the RCN International Research Conference in Manchester (6th-8th September 2023). - Direct NIHR presentation: The findings of the survey were presented to Professor Ruth Endacott (NIHR Director of Nursing & Midwifery). What is next? We are planning 2 publications and an update to NIHR.

fb112e5b-f7be-4ada-a37c-8e959119e1c3 Adolescent Resilience to OVercome Adversity: EmpoweRment and intervention development – the ROVER study Lead applicant: Anne-Sophie Darlington Co-applicants : Professor Graham Roberts , Professor Mary Barker , Dr Ivo Vassilev University of Southampton, Dr Catherine Hill Associate Professor in Child Health at the University of Southampton, Dr Jana Kreppner Associate Professor in Developmental Psychopathology within Psychology at the University of Southampton , Dr Luise Marino , Abigail Oakley Project Summary: Mental health conditions and symptoms in children and young people are increasing. Children and young people (CYP) with a chronic physical health condition often report having mental health problems such as feelings of anxiety and depression. A lot of research has focused on risk – circumstances that make it more likely for young people to experience mental health problems. In this project we want to focus on resilience - the young person’s ability to use their strengths and support from family and friends to overcome challenges in their life. Resilience has not often been a focus of support programmes for CYP with a physical condition. We would like to find out what experiences are common for young people living with physical health conditions, so that we can develop a support programme that applies across Child Health. We will use knowledge from these shared experiences to co-create the support programme with young people – called ‘tools for life’ (suggestion by CYP). We will also partner with national charities (partnerships have already been developed) who have worked with us before and who are very interested in supporting CYP around their mental health. The charity partners could help us to develop support components that are very specific to the condition (for example, fear of cancer coming back), which can be included in the overall support programme. Finally, work with young people has taught us that flexibility is very important: flexibility in when they access support, the way they access it and how it is offered to them. We will work together with young to shape this flexibility in support. The project will have four parts: Part 1 – Finding out what might work: List successful support components from 15 existing summaries of the evidence (reviews of the literature) to date and a report from Wellcome (an independent global charitable foundation which focuses on research), and identify the support elements (e.g., building confidence) which work well, and are acceptable to young people. Part 2 – Developing partnerships: Develop a partnership with local stakeholders (e.g., Paul Hughes and Laura Renishaw-Villier – Hub stakeholders; SolentMind, No Limits) and national charities (e.g., Children’s Cancer and Leukaemia Group, Kidney Care UK, Asthma UK). who can support the development of the support programme, both the general as disease-specific elements. We will hold several workshops with stakeholders to develop the partnership and agree on the goals of the partnership and ways to work together. Part 3 – Developing the support programme: We will co-create (develop together with young people) the support programme– ‘tools for life’ - to increase resilience. We will focus on flexibility in the way the programme is offered to young people, and when young people access the programme, to suit their needs. This flexibility will make young people more likely to use the programme. Part 4: Testing the support programme: We will test the support programme with 30 young people, to find out how many young people use the programme, if the programme is acceptable, how they use the programme, and how much they use the programme. We will also find out what the most important indicators of success are for the programme, such as young people experiencing less symptoms of anxiety and depression, and a better quality of life. What did we find out? The problem: Children and young people with a physical health condition are at a higher risk of developing mental health problems. Existing support programmes do not focus on building resilience – the ability to bounce back and stay mentally strong by using available resources and support networks when facing challenges. Also, many programmes fail to keep young people engaged. This project aimed to explore the support needs of young people and the best way to deliver a programme that builds resilience. What we did: We reviewed existing support programmes from the literature. Then we interviewed young people (32 with a physical health condition, and 25 without, ages 11-18 years), 12 parents of young people aged 11-17 years, and 5 healthcare providers from hospitals, charities and schools across the UK. A range of health conditions were represented, including cancer, heart disease, type 1 diabetes, and asthma. The interviews explored key stressors young people face, the support they need, and preferences for how support should be delivered. What we found: Priority stressors were related to managing the health condition, school/social life, and the future. Key support strategies identified included: 1) Normalisation through connection with other young people (e.g. chat forums), peer training (e.g. ‘living with a health condition’ in school curriculum); 2) Coping, including practical methods (e.g. knowing what to expect during hospital visits), and skills for navigating changes in peer relationships; 3) Prompt reassurance from healthcare providers during hospital visits, via text messaging service, and access to youth workers. Participants preferred a flexible approach that combined online resources with in-person support. Potential impact: Based on our findings, we have developed a prototype support programme that combines online resources with access to healthcare providers for timely reassurance and problem-solving. We are now seeking feedback from young people on this prototype and will use their input to create a full-scale version. If the support programme proves effective, it could help improve the mental health of young people with a physical health condition. What is the impact of this knowledge? • Relationship building: We established strong links with key stakeholders, including clinical colleagues across paediatric specialties at University Hospital Southampton (UHS), representatives from Hampshire and Isle of Wight ICB, Dorset HealthCare, and national and regional disease charities. These collaborations supported participant recruitment and informed intervention development. In the long-term, these relationships will be crucial in ensuring the widespread implementation of the intervention across the health and care system. • Embedding of EDI and PPIE: We conducted extensive PPIE work with community groups, including Winchester Youth Council, Breakout Youth, and Yellow Brick Road, ensuring that the voices of children and young people (CYP) from diverse backgrounds, including those from the LGBTQIA+ community and socioeconomically disadvantaged areas, were represented in the study. • Empowerment of young people: CYP gained a strong sense of empowerment and an enhanced awareness of their own resilience and well-being while contributing to the study. This impact was far-reaching, as the study included patients from UHS paediatric units, and students from local schools (Toynbee and Applemore) and colleges (Eastleigh College and Sparsholt College). • Novel insights into well-being: This study provided novel insights into resilience and well-being for CYP, enriching the broader narrative on CYP mental health. We also co-developed several prototype intervention proposals, which will pave the way for creating an intervention to improve resilience and mental health for young people within healthcare settings. What Next • We are currently: seeking feedback from young people on the prototype resilience intervention preparing a manuscript for submission to a high-impact a peer-reviewed journal. The findings from this study will be inform the development of a grant application, aimed at co-creating the full-scale resilience intervention with input from young people and their support networks. If the intervention proves effective, it will be implemented in practice to bolster mental health outcomes for young people with a physical chronic condition, while also reducing the burden on health and social care services.

3832ef1c-ee61-4cdf-8362-5cdbe7212017 Wessex NHS Insights Prioritisation Programme Project (NIPP) Wessex NHS Insights Prioritisation Programme Project (NIPP) National Institute of Health and Care Research (NIHR) Applied Research Collaboration (ARC) Wessex and Wessex Academic Health Science Network (AHSN) Digital innovations for people living with frailty Read the Health Innovation Network report Project team Nicola Andrews (NIHR ARC Wessex), Cindy Brooks (NIHR ARC Wessex), Cheryl Davies (Wessex AHSN), Linda Du Preez (Wessex AHSN), Richard Finley (Wessex AHSN), David Kryl (NIHR ARC Wessex and Wessex AHSN), Susi Lund (NIHR ARC Wessex), Michelle Myall (NIHR ARC Wessex), Rebecca Player (Wessex AHSN) and Phoebe Woodhead (Wessex AHSN). Background to the project NIPP was funded by NHS England’s Accelerated Access Collaborative to enable ARCs and AHSNs to work together to accelerate the evaluation and implementation of innovations that support post-pandemic ways of working, build service resilience and deliver benefits to patients. The Wessex NIPP project focused on the use of digital interventions to support the care of people with frailty. We worked collaboratively with stakeholders from across the Integrated Care Systems in Dorset and Hampshire and Isle of Wight to identify system priorities in this area. The project had several components: 1 – Evaluation of uptake and use of the myCOPD app by older people We undertook a mixed methods evaluation of the myCOPD app , a digital monitoring and self-management tool, in relation to its use by older people. The findings showed a higher prevalence of COPD in the myCOPD eligible population than the general population, highlighting the importance of understanding the impact of frailty on uptake and use of the app. Those aged 75 and over, or living with moderate or severe frailty, were less likely to register with and more likely to decline the app. There was also evidence that follow-up support to promote use of the app could increase activation and help overcome technical barriers. Evaluation of myCOPD app - Summary of findings (ARC Wessex) .pdf Download PDF • 180KB Evaluation of myCOPD app - Full Report .pdf Download PDF • 368KB 2 – Development of a Theory of Change on use of data to enhance care of people with frailty Theory of Change is a method to develop understanding of how an initiative can achieve impact. This is displayed in a Theory of Change map. The development and refinement of the Theory of Change map drew on a review of the evidence and individual discussions with a wide range of stakeholders. Participants were from primary care, community services and acute care working in digital health or care, frailty, commissioning and population health management. Stakeholders identified that a lack of availability of routinely collected data from across organisations to inform decision-making impacted the care provided to people with frailty. Theory of Change map - Use of data to enhance frailty care .pdf Download PDF • 176KB Theory of Change Report - Use of data to enhance frailty care .pdf Download PDF • 461KB 3 - Investigation of the use, applicability and acceptability of digital remote monitoring for older people a) Listening activities with older people’s community groups to understand perceptions of digital remote monitoring We held face-to-face events at six older people’s community group meetings, including a carers’ group, an exercise class and a community group serving a majority black ethnic population. At these events we discussed benefits, concerns and barriers to the use of digital remote monitoring (the ability to monitor aspects of an individual’s health remotely using technology). We also asked group members how they thought their views might change as their health or abilities declined. b) Research study investigating use and acceptability of digital remote monitoring for older people with frailty in the community This mixed methods research study investigated digital monitoring at home approaches among older people with frailty, using Artificial Intelligence (AI)-facilitated sensors to monitor daily activities and routines. c) Evaluation of digitally enabled care within frailty virtual wards The evaluation used qualitative data from two frailty virtual wards ( NHS England » Virtual wards ) to explore the use, decision-making and impact of digital remote monitoring. We combined the qualitative data from the above three work packages (a, b and c) for thematic analysis. We found that a personalised approach is important, with a need to consider practicalities (such as cost and sensor positioning) and design of the technology. Face-to-face care is highly valued and should not be replaced by digital remote monitoring. Users and carers need to know what to expect, how the technology works, who is monitoring and when; this would aid trust. NIPP 2022-23 summary report .pdf Download PDF • 624KB NIPP 2022-23 Full report .pdf Download PDF • 838KB 4 - Co-production, piloting and evaluation of an online Implementation Toolkit Implementation is a complex process. For those tasked with introducing an innovation or a change to practice, service provision or delivery, there are a range of models, frameworks and tools to choose from to support the implementation journey. However, these can be inaccessible, specific to particular user groups, or fail to take implementation considerations into account at the outset. The Web-based Implementation Toolkit (WIT) was co-produced with a range of stakeholders by NIHR ARC Wessex. It is a user-friendly and accessible guide on what needs to be considered when implementing and how to achieve this. WIT can be accessed at: Helpful resources | NIHR ARC Wessex More details can be found at: Implementation | NIHR ARC Wessex Rapid Insights Guide for 2022/23 work A Rapid Insights Guide (with project highlights) was produced for NHS England at the end of the 2022/23 projects (work packages 3 and 4 above). Rapid insights report NHS E_for submission .pdf Download PDF • 322KB

257ff9a8-4656-4b12-a5fc-4ef46bb650ab COMPLETED: Neuro Online (Formerly From Clinic to E-Clinic): Evaluating the Implementation of the My Medical Record Platform in Young-Onset Dementia and Huntington’s Disease. Principal Investigator: Dr Chris Kipps Team members : Dr Chris Kipps, Neurologist and Hon Senior Lecturer, University of Southampton Dr Sarah Fearn, Senior Research Fellow, University of Southampton Dr John Spreadbury, Senior Research Fellow, University of Southampton Dr Alex Young, Senior Research Assistant, University of Southampton Dr Rachel Chappell, Project Manager Start : 1 June 2020 Ends : 31 May 2027 Project Partners : University of Southampton, University Hospital Southampton NHS Foundation Trust, The Health Foundation Lay summary: Digital health platforms can improve care and support self-management, but only if they actually work and if people make use of them. The Neuro Online study aims to better understand how the online platform My Medical Record can be used to support and improve care for people with long-term neurological conditions. Aims: We want to better understand the factors that influence the uptake, use, and effectiveness of an online care and self-management platform for patients with long-term neurological conditions, their carers and the healthcare professionals who care for them. Design and Methods: The Neuro Online study will use surveys and My Medical Record system data to better understand how and why people use the Neuro section of My Medical Record. We will recruit 2000 patients, carers and healthcare professionals to participate for up to 7 years. During this time we will track how they use the online platform and their thoughts on it. We will also ask patients and carers about their well-being and their patient activation measure so that we can compare their experiences with the platform to this information. Participants will have the opportunity to participate in a number of additional sub-studies, which focus on particular issues such as quality of life, what individual characteristics are associated with use (or not) of the platform, and whether certain functions of the platform such as care planning are useful. A small number of patients will be asked to participate in face-to-face interviews to assess their use of the platform. NHS staff will be surveyed to see if platform use changes how they deliver care. As online platforms are increasingly being developed for the NHS, we hope the study will help understand how to make them relevant, useful and appealing to use. The findings should help to optimise the design and usefulness of these online tools, with the aim of supporting and improving the delivery of care. What did we learn? What Next? • We will continue to recruit to the study until 2027 •Look at other characteristics e.g. years since diagnosis; education • Link to: literature review qualitative work work on digital healthcare in general (Neuro Digital) outcome measures optimisation of outpatient care • Feedback to stakeholders Related publication: A Comprehensive Literature Search of Digital Health Technology Use in Neurological Conditions: Review of Digital Tools to Promote Self-management and Support

5a0c9214-8a00-419e-80b5-dd5d80c94fdf ADOPTED PROJECT: Magnet4Europe: Improving mental health and wellbeing in the health care workplace Joint Lead: Professor Peter Griffiths and Professor Jane Ball Partners: University of Southampton, Katholieke Universiteit Leuven (KUL), Belgium Start date – Jan 2020 End date – Dec 2023 Lay Summary The pervasiveness and growing levels with which mental health morbidity is reported by healthcare professionals is a matter of concern. Underlying causes are frequently rooted within the work environment. In the United States, implementing the Magnet© model of organizational work re-design for nurses in hospitals has been associated with improved mental health, reduced burnout and turnover and improved patient outcomes, yet the model has not been implemented at scale in Europe. The aim of the EU-funded Magnet4Europe study is to transfer, modify, scale up, and evaluate the Magnet© model in 60 European hospitals in 6 countries (Belgium, England, Germany, Ireland, Norway, Sweden) between 2020 and 2023. The intervention involves the following: implementing hospital-wide change via a bundle of organizational measures as stipulated in the Magnet© manual, facilitated by one-to-one twinning with 60 Magnet© recognized U.S. hospitals with experience in implementing the Magnet© model, a European learning collaborative for hospital managers, and a critical mass of hospitals promoting innovation to attract public interest and foster replication. Magnet4Europe uses a usual-practice wait-list cluster randomized trial (RCT) to determine the effect and costs of Magnet© hospital organizational redesign on nurse and physician health outcomes and wellbeing, with burnout as the primary outcome, using validated instruments. Secondary outcome variables include staff well-being and turnover. In addition, the implementation of the intervention is evaluated using a nested mixed-methods process evaluation, based on focus groups and individual interviews with a selection of hospitals in the participating countries. Analyses will be based on quantitative (RCT) and qualitative methods (process evaluation) and a triangulation of the findings. Dissemination of the results are planned for different audiences, including clinicians, hospital managers, policymakers and the wider public. NB: The term ‘Physician’ is used for consistency across the EU countries in the study Consortium. In the UK context the staff group referred to equates to Medical Staff -Medics Intervention Hospital Magnet® is a trademark of ANCC registered in the United States of America and other jurisdictions and is being used under license from ANCC. All rights are reserved by ANCC. ANCC’s consent to the use of the Intervention Hospital Magnet® mark shall not be construed as ANCC sponsoring, participating, or endorsing the Magnet4Europe intervention. ©American Nurses Credentialing Center. Reproduced under license from the American Nurses Credentialing Center. All rights reserved. Publications Laying the foundations for implementing Magnet principles in hospitals in Europe: A qualitative analysis - ScienceDirect

bfee6430-aafd-44b2-bd89-074b9c7bf0b9 COMPLETED ADOPTED PROJECT: ADAPT: The cross-sector implementation of NICE-recommended CBT-based interventions for young people in care: Framework Chief Investigator: Dr Rachel Hiller– University of Southampton Project Team Members: Dr Gretchen Bjornstad– University of Exeter, Dr Tim Clarke – Norfolk & Waveney Children and Young People Care Group, Dr Kristian Hudson– Improvement Academy Bradford Teaching Hospital NHS Foundation Trust, Professor John Macleod– University of Bristol, Dr Ruth McGovern– Newcastle University, Dr Hugh McLeod– University of Bristol, Professor Richard Meiser-Stedman– University of East Anglia, Dr Sara Morgan– University of Southampton, Dr Beverley Slater– Bradford Institute of Health Research, Professor Paul Stallard– University of Bath, ProfessorJohn Wright– Bradford Institute of Health Research, Dr Patrick Smith– King’s College London. Organisations Involved: Swindon Borough Council, Bath and North East Somerset (BaNES) Children’s Services, Thinking Allowed specialist-service, Bristol, Newcastle City Council Children’s Social Care, Child and Adolescent Mental Health Services (CAMHS) (East) Background: Young people in care (care-experienced young people; CEYP) have substantially higher rates of mental health difficulties compared to their peers. Their unaddressed mental health needs have been identified as a key driver of a range of poor outcomes that categorise this group. For example, CEYP they are five times more likely than peers to be excluded from school, comprise 50% of the young male prison population, and 25% of the homeless population. Such outcomes are not inevitable. Yet services are often struggling to effectively address the mental health needs of this group, and thus prevent some of these wide-ranging consequences. To begin to address this complex issue, we are proposing a pilot implementation project, working with CAMHS, social care and third- sector mental health services across four target ARCs. Our pilot project aims to address this via overlapping stages that form the essential framework for a full-scale implementation trial. These are: (1) A scoping review and consultation with CEYP, carers, and services to develop an initial implementation framework, based on the consolidated framework for implementation research (CFIR) (2) The development of our implementation resources, including training materials What did we find out? We found that young adults aged 18-25 did not engage with the RADAR/ADAPT programme, and may not engage with perpetrator services, if they do not have motivation to do so. The implications are that this poses a risk to victims, particularly if perpetrators have high risk behaviours. To address this, more work should be done to disrupt high risk individuals and refer them on to workshops that require less time commitment; in order to initiate self-awareness around their behaviors and their impact on others. Given that children were a strong motivation for completing a programme, it seemed almost paradoxical that there were no specialist services made available for children within the DAPP model. Although there is compelling evidence to suggest that men changed their behaviours following the programme, police reoffending data suggests that, for a minority of individuals, more work is required to fully embed positive behaviours. A mentoring service may support such aims. To further support evidence on behavioural change, long term outcomes related to victim harm should be measured; for example, through a short questionnaire filled out by current or former partners. The RADAR/ ADAPT programme is specific to the domestic abuse experienced between intimate partners within heterosexual relationships. The implications are that a number of individuals may not find the programmes appropriate to their context. Therefore pilot programmes should be developed to tackle different relationship dynamics and types of abuse, including lesbian gay bisexual transgender queer (LGBTQ) relationships, and Elder Abuse. Finally, to full achieve a community coordinated response, and make the most of the resources available, pathways of referrals and a mutual understanding of roles and responsibilities should be clearly set out, to cover both statutory and non-statutory organisations. What did we do with this knowlege? •The findings from the research were communicated with the commissioners of future services in Domestic Abuse in Hampshire. •The next commissioned service considered the findings of the research in the tender. •For example, given the risk of non-engagement of younger adults, a specific service for 18-24 year olds, was set up that working on the specific needs of this population group. •The findings added to the limited knowledge around voluntary community perpetrator programmes. •It was published in the Open Access journal PloS ONE https://doi.org/10.1371/journal.pone.0218408 •Dr Sara Morgan was interviewed alongside Tracy Rutherford (Hampton Trust) on the Patrick Sisson show (BBC Radio Solent) Where next? •The work on ADAPT has led to further research in this area through existing partnerships, including a national evaluation of CARA •We have continued relationships with police partners who were interested in further evaluation work, which led to co-funding of other projects including Operation Foundation and MASP •Personally, Chief Investigator is interested in the findings around younger perpetrators, and how to engage them better in the health and social care system, and improve their life-chances. •Where many perpetrators on ADAPT have experienced domestic abuse as children, and they themselves have children, I’m interested in pursuing work around preventing the intergenerational transmission of domestic abuse. Publications Baseline characteristics and outcomes of the main perpetrator programme within the Hampshire Domestic Abuse Prevention Partnership, UK: A mixed methods study | PLOS One

Senior Research Assistant < Back Gabrielle Palermo Senior Research Assistant Ageing and Dementia Gabrielle Palermo is a Senior Research Assistant at the NIHR ARC Wessex Mental Health Hub, University of Southampton. She supports quantitative research on alcohol use disorder in older adults and contributes to other Hub projects involving complex routine datasets, including the OLA study. With over 20 years of experience in applied statistics, Gabrielle specialises in quantitative methods for epidemiological, socioeconomic, and public health research, particularly in the analysis of survey and administrative data. Her expertise includes multilevel modelling, complex survey design for cross-sectional and longitudinal data, data cleaning and linkage, and the treatment of missing data. She holds an MSc in Population Studies and a BSc in Statistics from ENCE–IBGE (Brazil). Her doctoral research focuses on statistical methodologies for unbalanced longitudinal data in sample-based educational panel studies, with emphasis on school effectiveness and pupil mobility. Since 2022, she has worked across multiple departments within the Faculty of Medicine at the University of Southampton, contributing to research in epidemiology and clinical trials. Previous Next

5241b3d8-a7e9-409f-8d8a-e86421d8cdd5 Evaluating impact of personalised care at service at service and system levels: Learning from the Wessex Academy for Skills in Personalised Care (WASP) programme. Chief Investigators: Professor Mari Carmen Portillo, Professor of Long-Term Conditions. School of Health Sciences. University of Southampton, Dr Louise Johnson, Consultant Therapist and WASP Project Lead, University Hospitals Dorset Team: Dr Beth Clark, WASP Personalised Care Facilitator, University of Southampton Matthew Wood, WASP Digital Lead and current ARC Wessex Statistical Intern Dr Hayden Kirk, Consultant Physiotherapist & Clinical Director Adults Southampton, Solent NHS Trust Janine Ord, Head of Population Health, Dorset Integrated Care Board Fran White, Director of Policy, Innovation and Partnerships, Hampshire and Isle of Wight Integrated Care Board Aisling Flynn, Lecturer in Occupational Therapy and Post-Doctoral Researcher, Bournemouth University Sally Dace, Patient and Public Involvement Representative Luisa Holt, Research Fellow, University of Southampton Partners: Dorset Integrated Care Board, Hampshire and Isle of Wight Integrated Care Board, Dorset County Hospital NHS Foundation Trust, University Hospitals Dorset NHS Foundation Trust, Hampshire and Isle of Wight NHS Foundation Trust, Bournemouth University, University of Southampton. Start: 1 October 2024 End: 31 March 2026 Aim(s) To evaluate if and how the Wessex Academy for Skills in Personalised Care (WASP) programme has led to improvements within healthcare services, and the impacts for patients, services and the wider health system. Background Personalised care focuses on tailoring health services to individuals’ needs and preferences. People who receive personalised care have greater satisfaction, and are more likely to feel in control of their own health and wellbeing. Services that work in a personalised way are likely to use their resource more efficiently - by offering people the right support, in the right way, at the right time. Despite the benefits, widespread adoption of personalised care has been slow. There are many reasons for this – including having healthcare staff who are trained and believe in its importance, and having systems that support its delivery. Since 2018, the Wessex Academy for Skills in Personalised Care (WASP) has been helping NHS services to improve personalised care delivery. This support involves three parts: EVALUATION –understanding current care by collecting the views of service users, frontline clinicians, managers and people who plan services (commissioners) LEARN – training healthcare teams, so they have the knowledge, skills and confidence to change how they work IMPLEMENT – supporting services to identify and deliver improvement projects, with measurable benefits for patients In this research, we will evaluate impact of the programme. This is important to: · know how to improve WASP in the future; · learn how to accelerate the adoption of personalised care within the NHS; · demonstrate impact, so we can spread the benefits more widely. Design We will create a series of case studies from services that have already completed WASP, highlighting learning from the programme, if/how this has been put into practice, and the benefits to service users. We will use interviews and surveys to collect information from healthcare staff, who are working in services that completeWASP in 2024/25. This will allow us to understand peoples experience of the programme, and the impacts this leads to. Interviews will take place at several timepoints, understanding learning development over time. Results will be considered together. Patient, public and community involvement Patient and public feedback has been incorporated into this proposal. Throughout the research, we will work with patient contributors, including a co-applicant, to shape and develop the research programme, ensure we are capturing the most important impacts, and to develop accessible ways to share our findings. Dissemination We will use the findings to create recommendations for how the WASP programme can be improved and spread in the future, reaching more people with long term conditions. We will share results at conferences and in academic journals; and presenting in a range of accessible formats, using the WASP website, social media and in the community.

d1fc46a9-cf57-4dda-98fb-a4ccb44fa87b FORTH – FORecasting Turbulence in Hospitals Chief Investigator: Edilson Arruda, Associate Professor, University of Southampton Team: Christine Currie University of Southampton Alexandra Hogan NHS Salisbury/ University of Southampton Jamie MacNamara University Hospital Southampton Mark Wright University Hospital Southampton Michael Boniface University of Southampton Carlos Lamas-Fernandez University of Southampton Partners: Salisbury Hospitals NHS Foundation Trust, University of Southapton, University Hospital NHS Foundation Trust. Start: 1 October 2024 End: 31 March 2026 Summary Over time, health systems face changes. Population grows older or hospitals can perform new treatments. It is difficult to match the resources of hospitals with population needs. If they do not match, waiting times for treatment increase and hospitals become fuller. Hospitals being too full can result in worse care for patients. For example, hospitals might need to cancel surgeries. Aim(s) of the research When the usual demand for hospital resources changes, it becomes difficult for hospitals to provide care. We call this turbulence. Our first objective is to define how turbulence can be measured from data. Then, we will use artificial intelligence to understand the causes of turbulence. We will also create models for short-term prediction of turbulence. This will help hospital plan better. Design and methods used This project will look at the records of patients in hospitals to understand what resources they use. The data will give us an understanding of how long certain activities take. For example, the recovery from surgery. We will predict when these times are changing using artificial intelligence. This can help hospitals be alert of upcoming changes, so they choose the best way to react. Patient, public and community involvement (PPCI) We will engage with the views of public, patients and communities during the project execution phase. We will hold workshops with patient groups that have been to hospital. We will understand their views on the planning services. We will also take into account their ideas when defining turbulence. Dissemination This project was co-designed and will be supported by University Hospital Southampton (UHS) and Salisbury Hospital. The results will be disseminated and championed within the partnering institutions, and further presented in workshops involving neighbouring NHS Trusts in Wessex and in the south east and south west of England. We will also publish papers and reports to disseminate the work to a larger audience within the UK and internationally.

7a002421-31aa-4897-bd4d-da37a8b4cf6a Avoiding care escalations through targeted care coordination for people with multiple long-term conditions – a knowledge mobilisation project Chief Investigator: Simon Fraser, Professor of Public Health, University of Southampton Team: Nisreen Alwan, Professor of Public Health, University of Southampton, Lead for the Healthy Communities theme (from 1st Oct 2024), NIHR ARC Wessex. Robin Poole, Consultant in Public Health, Southampton City Council. Michael Boniface, Professorial Fellow of Information Technology, Director of the IT Innovation Centre, University of Southampton, and lead for the Workforce and Health Systems theme, NIHR ARC Wessex. Kelly Cheung, PPI lead, NIHR ARC Wessex and University Hospitals Southampton. Emilia Holland, Public Health Registrar, University of Southampton. Seb Stannard, Research Fellow, MELD-B project, University of Southampton. Claire Sheikh, Senior Pharmacist, Living Well Partnership, Southampton. Kelly Hislop Lennie, Principal Academic in Adult Nursing, Bournemouth University. Lynn Laidlaw, Patient and public contributor and researcher, PPI contributor MELD-B Sally Dace, PPI contributor MELD-B and Wessex ARC James McMahon, PPI contributor MELD-B, School of Primary Care Research UoS, South West Genomic Medicine Service. Lead PPIE for DIALOR, a digital intervention addressing frailty in Bournemouth University Partners: Hampshire and Isle of Wight Integrated Care Board, University Hospital Southampton NHS Foundation Trust, Bournemouth University, Southampton City Council, Living Well Partnership. Start: 1 October 2024 End: 31 March 2026 Summary This project is about taking knowledge that has been learned from two ongoing research studies about living with multiple long-term health conditions to see if we can apply it in a ‘real life’ setting in a large general practice in Southampton. Two research projects called ‘MELD-B’ and ‘the ARC Treatment Burden study’ have identified many aspects that make living with multiple long-term conditions challenging for people. This ‘workload’ might make it more likely that people feel overwhelmed by their health conditions. If people have a high workload, and particularly if they are frail, this can end up with them needing to be admitted to hospital. We have also identified that some aspects of people’s early life can make it more likely that they are admitted to hospital in middle age. If such challenges are recognised in advance and appropriate help provided, such unplanned admissions might be avoided. Care coordinators are people working in NHS settings, including GP surgeries, to identify and support people at risk of such admissions. They have a lot of people on their books and it can be challenging to know who needs what help, and who needs it most urgently. We want to see if the things we have learned from our previous research study can help the care coordinator make these decisions. In this short project we plan to do this in a large practice in Southampton, the Living Well Partnership, which looks after about 45,000 people. We plan to: · collate all the aspects identified in these studies that might make people more vulnerable · make sure we understand the current way care coordinators identify and engage with patients · work with all the relevant people in the practice to make sure we take people on this journey with us · undertake some workshops, co-led by PPI contributors, to co-develop the strategy for adding new aspects (such as the ‘workload’ and early life aspects mentioned above) to current approaches · test the addition of adding these in Living Well Partnership and evaluate the process We will share our findings at an event involving as many of the team from the Living Well Partnership as we can and get their feedback. This event will also include other relevant interested parties, such as those from the Integrated Care Board. PPI contributors have been deeply involved in the work of MELD-B, have helped to shape this proposal and will continue as co-investigators. They will be reimbursed for their contributions according to NIHR guidance. Read the public policy briefing

8549d888-5b96-445e-9088-9a757edd9282 ADOPTED: IneQUIty in end of life care for children: Investigating experiences and families’ Needs after sudden and unexpecTEd deaTh in children and young people – the QUINTET study Chief Investigators: Professor Anne-Sophie Darlington, School of Health Sciences, University of Southampton and Dr Katherine Hunt, Senior Research Fellow, School of Health Sciences, University of Southampton Team: Dr Vicky Payne, School of Health Sciences, University of Southampton, Miss Sarah Hodkinson, Associate Professor, Department of Music, University of Southampton, Professor Heather Gage, Professor of Health Economics, School of Biosciences and Medicine, University of Surrey, Dr Emily Cooper, Law and Policing, University of Central Lancashire, Dr Jamal Hossain, Lecturer in Applied Statistics, School of Health Sciences, University of Southampton, Dr Joanna Garstang, Consultant Community Paediatrician, University of Birmingham, Dr Nicola Speed, SUDC (UK), Miss Emma Kneebone, 2wish, Miss Stacey John, Forget Me Not Children's Hospice. From: 01/12/2024 to: 30/11/2027 BACKGROUND Around 3000 children die each year in England and Wales, and 30% of deaths represent infants and children who die unexpectedly or suddenly from accidents, suicide or unexplained deaths. Clear guidance and palliative care services exist for children who die of a life-limiting condition, including emotional and psychological support for their families, which extends into bereavement. However, clear guidance and care are not available for sudden and unexpected infant and child deaths, even though these are often the most tragic, brutal and shocking deaths. We do not know very much about what it is like for families, what care they need, what care is available, how they manage and cope in the longer term after their child’s death, and how professionals need to be supported after often traumatic experiences. PLAN We recently brought together organisations and professionals who care for families when a child has died suddenly (e.g., health professionals, fire department, police, hospices, charities, schools) to commit to working together to improve care for these families, and improve training and support for professionals. This network helped develop this project. We want to investigate these aspects (organised in Work Packages -WPs), focusing on different questions: WP1: What care is available for these families – around the time of the death and into bereavement, and where do children die. We will investigate this through 1) past research, and 2) existing database with information on child deaths. WP2: Which services are available to families and who provides that care, and what are the experiences and needs of the professionals providing that care? We will 1) interview professionals who carry out the Child Death Review and 2) interview professionals who provide care in different settings. WP3: What are the experiences of families, what care helped and what do they need? And what are the long-term consequences for parents, such as grief and depression and physical health? - we will investigate this by 1) interviewing bereaved parents about their experiences, and 2) asking bereaved parents to complete a questionnaire about grief, depression and quality of care. WP4: What recommendations around care and support should we make? We will use the information from the previous work packages to develop recommendations on how to improve care around the time of the death and in bereavement. We will agree what the needs are for training and supporting professionals. INVOLVING FAMILIES We will involve bereaved parents though the organisations included in our network. We have two parent and two other lay members as co-applicants on the study. A formal parent advisory group will be set up to help us with research questions, materials, design of the study, recruiting parents, content, social media presence and study branding, and dissemination. We will also work with a team of parent investigators who will provide guidance to the researcher and support participants during interviews. DISSEMINATION We will produce scientific papers, develop recommendations for care and maintain a network of parents and professionals to support the project. We will create national awareness of the needs of these families and work with a policy engagement organisation to influence policy and change practice. We will produce newsletters, social media posts, and result postcards to update families and the wider network.

60f9f2f4-ec86-4835-abb5-cb3e74214a4f COMPLETED: Domestic Abuse and Life-Limiting Illness: identifying and supporting adults at risk (DALLI Study) Principal Investigator: Dr Michelle Myall Team Members: Dr Michelle Myall (Principal Research Fellow ARC Wessex, School of Health Sciences, University of Southampton); Sophia Taylor (Senior Research Assistant , School of Health Sciences, University of Southampton); Dr Susi Lund (Visiting Research Fellow, School of Health Sciences, University of Southampton); Karen Drake (Matron in Specialist Palliative Care, Salisbury NHS Foundation Trust); Sally Dace (Patient and Public Representative) Start : 1 January 2021 Ends: 30 September 2024 Project Partners: University of Southampton; University Hospital Southampton NHS Foundation Trust (UHS); Weldmar Hospicecare, Dorset; Salisbury NHS Foundation Trust; Yellow Door Domestic and Sexual Abuse Charity; Southampton City Council; The Rowans Hospice, Portsmouth; Body Positive, Dorset ; Citizens Advice Southampton; Hampshire Macmillan Cancer Support Citizens Advice Service Summary of Findings Why the study is important In England and Wales an estimated 2.4 million adults experience domestic abuse (DA). People living with a life-limiting illness (LLI) are at increased risk of DA because they are vulnerable, frail, isolated and dependent on others. They may spend long periods of time in the home, in close proximity to the abuser, who is often their carer, and have difficulty accessing help and support. To date, little attention has been paid to the experiences of those living with a life-limiting-illness who are victims of DA, their specific needs and the extent to which these are being met by statutory and specialist and non-specialist services. Furthermore, we know little about the views and experiences of health and social care professionals who provide support to them. What we did Between 2021-2024 we conducted the mixed-method DALLI (Domestic Abuse and Life-Limiting Illness) study, which explored DA where it co-exists with LLI. Initially we carried out scoping work comprising a literature review; survey to map local service provision; and held informal discussions with those with lived experience, health and social care professionals working in hospice and palliative care services, and specialist domestic abuse organisations. This helped to identify research priorities and focus of the study. What we found Our scoping review highlighted the impact that DA has on mental health and wellbeing which can result in delays in screening, leading to late diagnosis and an illness advancing with only palliative rather than curable treatments being available. We know many people living with a LLI and at end-of-life are likely to access palliative and other health and care services frequently. Trusted relationships with healthcare professionals (HCP), enhanced by continuity of care can lead to the development of interpersonal trust between patient and HCP, increasing the likelihood of disclosures of abuse. However, interviews with health and social care professionals highlighted a lack confidence to ask about abuse, and challenges with recognising signs of abuse amongst the complexities of DA in the LLI context. This highlighted the need for increased training, education, and continued professional development in this area. Working with hospice and palliative care professionals, specialist and non-specialist third sector organisations, and people with lived experience, we established a Community of Practice and held a series of workshops with them over 15 months to co-develop the DALLI Toolkit. We also conducted interviews with health and care professionals and people from relevant third sector organisations to help inform Toolkit content. The Toolkit, which complements existing safeguarding policies, aims to increase practitioners’ confidence and understanding offering resources to support health and social care professionals working with people with a LLI identify and respond to DA encountered in practice. Outcomes Following piloting and evaluation the Toolkit has been adopted in a small number of hospice and palliative care settings in Wessex, and following discussions with Marie Curie’s Head of Safeguarding, is to be implemented in Marie Curie Hospices nationwide and included on their website as a resource for healthcare professionals. The Toolkit is also being used by domestic abuse services in local authorities and as an educational resource for social workers at a local university. Next steps It is now our aim to achieve greater impact and encourage adoption and spread to extend the Toolkit’s reach to other hospice and palliative care organisations and potentially other health and social care services. We have secured Impact Funding from Marie Curie to enable us to work with a professional production company to create a short promotional film about the DALLI Toolkit, and its use in practice, and hold a launch event in the Autumn 2024 to publicise the film and Toolkit and encourage wider adoption. Embedding and integration of the Toolkit will enable health and social care professionals to improve understanding of the complexities of DA in the LLI context and increase confidence to ask about and respond to DA. WATCH: ITV News report here Please see below copies of the DALLI toolkit and quick reference guide DALLI Toolkit v6.0 030924[58] .pdf Download PDF • 1.26MB DALLI Toolkit Quick reference Guide v0.3 140623[9] .pdf Download PDF • 260KB Publications: Domestic Abuse in the Context of Life-Limiting Illness: A Systematic Scoping Review: Michelle Myall ,1,2 Sophia Taylor,1,2 Sally Wheelwright,3 and Susi Lund1 1School of Health Sciences, University of Southampton, Southampton, UK 2NIHR ARC Wessex, University of Southampton, Southampton, UK 3Brighton and Sussex Medical School, University of Sussex, Brighton, UK Correspondence should be addressed to Michelle Myall; m.myall@soton.ac.uk https://doi.org/10.1155/2023/1841944