3a154492-5625-4fba-82b5-37d30dbaccaa Creating Learning Environments for Compassionate Care (CLECC) in mental health settings: an implementation study This project has been completed and had created the CLECC toolkit which you can see here Principal Investigator: Dr Michelle Myall Team members : Dr Michelle Myall (Senior Research and Implementation Fellow, School of Health Sciences, University of Southampton), Dr Sarah Williams (Associate Director for Research and Improvement, Solent NHS Trust) Professor Jackie Bridges (Professor of Older People's Care, School of Health Sciences, University of Southampton), Dr Jane Frankland (Senior Research Fellow, School of Health Sciences, University of Southampton), Cindy Brooks (Research Fellow, ARC Implementation team). Started: 1 October 2020 Ended : 30 September 2022 Project partners : Solent NHS Trust, Southern Health NHS Foundation Trust, NHS Improvement, Wessex AHSN, Centre for Implementation Science, University of Southampton. Co-funded by : NHS Improvement Lay summary Background There is some public concern about NHS hospital nurses’ capacity to provide compassionate care, but very little research about how to improve this situation. We have developed and piloted a programme called Creating Learning Environments for Compassionate Care (CLECC). In CLECC, all registered nurses and health care assistants from participating wards attend a study day, with a focus on team building and understanding patient experiences. A nurse educator (who is not usually part of the ward team) supports the team to try new ways of working on the ward, including regular supportive discussions on improving care. Ward managers attend learning groups to develop their leadership role. Volunteer team members receive training in observations of care and feeding back information to colleagues. In an earlier study, we piloted CLECC on four wards in two NHS hospitals, with two other wards continuing with business as usual. We found that CLECC could be put into practice on NHS hospital wards and that staff felt it improved their capacity to be compassionate. However, we found variations between the four nursing teams and two hospitals, in whether or not, staff felt able to take part in CLECC and to carry on with CLECC after the nurse educator left. We followed up the wards two years later and found that some wards had carried on using CLECC and shared the ideas with other teams. But some wards had stopped using CLECC and we found that this was influenced by amongst other factors: staffing levels, work priorities, staff turnover and managers’ support. The research findings to date suggest that each team differed in the ways they used and responded to the CLECC ideas. If we want programmes like CLECC to make a difference to patient care, we need more research to test it out in other settings. This will help us to better understand the conditions in which CLECC is most likely to make a positive difference and about how these conditions can be developed, supported and maintained. Aims of study This study will follow up to four nursing teams in mental health hospital settings who are using CLECC for the first time. We will use questionnaires, staff interviews and documentary evidence to gather data on the characteristics of organisations and teams, and the factors that influence CLECC’s progress in the first few months. We will look carefully at these data, working out the connections between the characteristics, the influencing factors and what happens when CLECC is used. We will develop a theory about how different organisational conditions affect the journey of programmes like CLECC. We will also use the study to test the best way to measure the impact of CLECC on staff well-being. How will findings be used? This research will help us understand what changes might be needed to get organisations ready for using CLECC. It will also mean we can identify in advance teams who are likely to benefit from CLECC, improving its value for money. We will use the findings to develop a guide for hospital managers to assess and improve their organisations and teams for their receptiveness to quality improvement activities like CLECC. We will share our findings with a wide range of people including patients and families, NHS managers, health and social care staff and other researchers.

15c54097-9d85-4170-b90f-d0f5767a45d4 Predicting Patient Deterioration Risks in COMMunities https://vimeo.com/689303375 Team: Principle Investigator – Professor Michael Boniface, University of Southampton Co-Investigator - Dr Francis Chmiel and Dr Dan Burns, University of Southampton Clinical Lead – Dr Matt Inada-Kim, Hampshire Hospitals NHS Foundation Trust Completed What did we learn? We found evidence for policies and practices supporting safe COVID-19 integrated care pathways in community settings for early identification of deterioration and timely escalation to hospital. Research validating home oxygen saturations as a marker of clinical deterioration in patients with suspected COVID-19 informed national policies and was critical and rapid evidence necessary to support the COVIDoximetry@home ( https://doi.org/10.1101/2020.11.06.20225938 under peer review at BMJ Open) What difference did it make? £ 500K NHSx RECOxCARE (Remote COVID oximetry care) project for COVID Virtual Wards in collaboration with HHFT, North Hants Primary Care Network, Mid Hants Primary Care Network, South Central Ambulance Service NHS Foundation Trust, WAHSN and University of Southampton IT Innovation Centre. Scaling nationally as the COVID oximetry@home programme, the guidance for people at home to purchase a pulse oximeter published on the BBC News Website https://www.bbc.co.uk/news/health-55733527 and broadcast on BBC News at 10 on Thursday 21st January 2021 (citing the ARC publication) Clinical model was adopted by the World Health Organisation Digital and data analytics approach for remote monitoring of patients in communities was presented by Inada-Kim and Boniface as part of the NHSx@home innovators engagement event 16th Sept 2021. COVID oximetry@home received the overall winner of the prestigious for HSJ Patient Safety Award 2021 Service evaluation demonstrated improved patient outcomes Boniface, M., Burns, D., Duckworth, C., Ahmed, M., Duruiheoma, F., Armitage, H., Ratcliffe, N., Duffy, J., O’Keeffe, C. and Inada-Kim, M., 2022. COVID-19 Oximetry@ home: evaluation of patient outcomes. BMJ Open Quality, 11(1), p.e001584. What impact has it had on patient and the health system? Remote monitoring of patients in communities is important for improved patient outcomes, hospital attendance/admissions avoidance and resource planning. Remote monitoring is a key NHS transformation within the NHS@Home programme Remote monitoring is being extended from COVID to all Acute Respiratory Infections, and is likely to be extended to other conditions in the future What's next? We are working with Hampshire Hospitals and NHS England to transfer the learning from COVID to more general approaches. This research is being conducted in: HDRUK rapid insight project (Jan22-Sep23) called PHILOSARIP “ Predicting Hospital Length of Stay in Acute Respiratory Infections Patients” Wessex ARC PARIEDA project which is tacking “ Prediction of Acute Respiratory Infection outcomes prior to Emergency Department Attendance” Resources Covid Oximetry at Home Toolkit - via AHSN Wessex Publications https://doi.org/10.1101/2020.11.06.20225938 https://doi.org/10.1136/bmjopen-2022-067378 Original Project outline ARC Wessex is supporting research to explore COVID patient risks (deterioration, admission and readmission) in community settings working with Hampshire Hospitals NHS Foundation (HHFT) Trust who are co-leading the development of national pathways linking community, primary and secondary care. According to leading acute care clinicians (Dr. Inada-Kim - HHFT) working at the forefront of UK’s COVID-19 emergency response and policymaking, two of most pronounced COVID-19 Unmet Medical Care Needs (UMCN) include: UMCN-1) Risk prediction tools on triage and admission to emergency care: Evidence shows that early identification of physiological deterioration risks improves patient outcomes through timely and appropriate interventions, including escalations to higher levels of acute care through hospital admissions and intensive care [1] . UMCN-2) Rapid follow up of patients post discharge: There is little evidence to predict the occurrence of COVID19-related complications following discharge, particularly for vulnerable patients with multiple long term conditions at high risk of adverse complication events, and therefore rapid follow up and continuous monitoring of a patients recovery is needed to reduce risk of readmission to hospital. In addition, consideration of population infection risks resulting from contact and transmission from infected individuals has demanded alternative care delivery models. During the initial phase of the pandemic patients freely made their way to GPs and hospitals increasing infection rates within the general population and the healthcare workforce, leading to policies aimed at reducing contact between infected patients and health care workers (HCWs) [2] . This has driven then need to reimagine care pathways that minimise physical interaction using virtual care (video conferencing, mobile symptom reporting/scores, real-time remote sensing, and surveillance) delivered through telemedicine solutions. Virtual care not only protects the population and HCWs during highly infectious periods of a pandemic but importantly offers significant benefits to patients who can now be treated longer in community settings reducing the number of admissions to hospital, the length of stay and mortality. PPDRCOMM proposes to undertake research to develop predictive models for early warning detection arising from a COVID-19 infection, capable of running in residential settings such as care homes. Models will use near-patient observation data (e.g., temperature, respiration rate, and blood oxygen levels), patient demographics, and comorbidities from patients in the community who are in the early stages of a COVID-19 infection. The measurements will be collected with high frequency such that machine-learning algorithms will be able to report real-time risk scores of imminent deteriorations. Overall, this models will allow for real-time detection of deterioration earlier than currently possible with conventional techniques. This will help address the clinical need for pre-emptively stopping the severe deterioration of those with a seemingly mild case of COVID-19. Read the Evaluation Pre-Print evaluation paper

0be5d40d-fcbc-4b27-971a-75e1967ce33d Development of a core outcome set for nurse wellbeing: a Delphi study Lead applicant: Dr Gemma Simons Co-applicants: Prof Jane Ball , Prof David Baldwin , Dr Emma Wadey, Dr Catherine Smith Participant Information Sheet : Download here Project Summary: Read project summary document (short summary) Read project summary document (long summary) Background : Little attention has been paid to the work lives and wellbeing of the nursing workforce, despite it being a priority area. Currently, there is no consensus on what wellbeing is or how it should be measured. An evidence-based, positive way of measuring wellbeing is through a Core Outcome Set. What is a Core Outcome Set? Outcomes are used to measure whether a strategy, intervention or action has had the required result. There are often multiple outcomes and ways of measuring them, which makes comparison difficult. A Core Outcome Set is an agreed, or consensus, set of outcomes and measurement tools that, when used, provide consistent and comprehensive focus as everyone is measuring and reporting the same outcomes in the same way. Aim: This project aims to develop a Core Outcome Set for Nurse Wellbeing. Objectives: Produce a list of potential wellbeing outcomes and help text to describe them in that are clear and meaningful for nurses [PPI panel] Develop a consensus between nurses and nurse wellbeing experts on a core outcome set for nurse wellbeing [Delphi Study] Identify and assess for quality measurement instruments for the core outcome set for nurse wellbeing identified by the Delphi study [Critical Literature Review] Select measurement tools for the identified core outcome set and agree on a final Core Outcome Set for Nurse Wellbeing [PPI panel and Study Advisory Group]. Implications and Impact: A Core Outcome Set for Nurse Wellbeing developed by nursing and nurse wellbeing experts will provide researchers and those undertaking governance with evidence-based and meaningful tools with which to evaluate wellbeing interventions. This study is registered on the Core Outcome Measures in Effectiveness Trials (COMET Initiative) database https://www.comet-initiative.org/Studies/Details/2433 Publiations The Mental Health of Medical Students: Supporting Wellbeing in Medical Education | Oxford Academic ( oup.com ) https://doi.org/10.1002/wps.21177

535f16ee-e98a-4782-81fa-97a73abd8468 ADOPTED: Improving patient safety, workforce wellbeing and NHS efficiency through improved shift patterns for nursing staff: study protocol Principal Investigator: Dr Chiara Dall'Ora, University of Southampton Project partners: University of Southampton; Nottingham University Hospitals NHS Trust; Herefordshire and Worcestershire Health and Care NHS Trust; Northumbria Healthcare NHS Foundation Trust; Sheffield Children’s NHS Foundation Trust; Southern Health NHS Foundation Trust; Nursing and Midwifery Council Team: Dr Hannah R. Barker (Qualitative lead), Prof Peter Griffiths (Senior Mentor), Dr Chiara Dall’Ora (Project lead) Public & staff involvement: Nursing staff, ward managers and matrons from 5 Trusts helped shape the DCE survey and future research priorities Funded : Academy of Medical Sciences Springboard grant Started: 1/9/23 Ended: 31/8/24 Lay summary What is the problem? If the COVID-19 pandemic has taught us something, it is how important the wellbeing of the health workforce is. Nurses form a big part of the health workforce, yet many leave their job because of poor working conditions. In recent years, hospital managers introduced long shifts for nurses, hoping nurses would be happier with their work-life balance. However, our research found that long shifts have negative effects for nurses and patients. We still do not know what good shift patterns look like. What we asked: How can shift patterns be designed to better support nurses’ wellbeing and help the NHS retain staff? We conducted interviews with nursing staff, ward managers and NHS directors across five Trusts, and a large UK survey (discrete choice experiment) with 1,449 registered nurses. What we found: Nurses value (1) consistency and predictability in rotas; (2) adequate rest between shifts; and (3) opportunities to enjoy work through meaningful time with patients and teams. Rigid, last‑minute rosters and very long shifts erode wellbeing. From the national survey: Night‑only patterns and having no whole weekends off are the least acceptable rota features and require the largest compensation to tolerate. Predictable schedules and having scope to request shifts are strongly valued. Nine‑to‑ten‑hour shifts are preferred over 12.5‑hour shifts. What this means: Collaborative rostering that balances service needs with personal circumstances can improve satisfaction and reduce turnover. Guaranteeing protected weekends where feasible, improving predictability, and avoiding very long duties are practical levers for better retention and patient care. What we did with the new knowledge: We ran 5 dissemination and co‑design workshops with NHS Trusts (Jan–Feb 2025) to share qualitative findings and plan next steps. Used findings to refine a national discrete choice experiments (DCEs) on rota preferences (n=1,449) and generate policy‑ready benchmarks for rota design and enhancements. Engaged workforce matrons and managers to shape future studies on flexible rostering and shift design. What's next? - Publish the DCE paper. - Produce a policy brief (ongoing with Public Policy | Southampton) - Attract funding to evaluate how flexible rostering can reduce sickness absence, turnover and costs - Co‑design of a shift‑work intervention with staff and managers (Hannah Barker NIHR Development & Skills Enhancement Award) - Support Trusts to pilot more predictable rotas, protected weekends and 9-10‑hour options where feasible. See article: Moving Beyond 12 Hour Shifts: How Evidence is Powering Change

1f1252b1-cfe9-4800-b5dd-f3b53069d91a Understanding psychosocial determinants of alcohol use disorder (AUD) in older adults: exploring the role of social networks and loneliness in living with AUD (OLA study 2). Project partners (charities, Universities, NHS trusts, care providers etc): University of Southampton, University Hospital Southampton NHS Foundation Trust Full team listing including PPI Professor Julia Sinclair – Chief Investigator Professor Jackie Bridges – Co-applicant Dr Becky Band – Co-applicant Dr Steph Hughes – Research Fellow Zara Linssen – Medical Student Sophie Crouzet – Medical Student Stephen Lim – Implementation Champion Melinda King – PPI advisor Start: 01/01/2023 End: 01/07/2024 Summary Alcohol use disorders (AUD) in older adults is a growing problem which is currently under-recognised and under-treated. With little research into this area, there is no in-depth understanding about the factors that may contribute to AUD in older adults, nor the lived experiences of this group. Some have suggested that factors such as social isolation, loneliness and loss associated with older age may be important in understanding alcohol use. We know that in general, limited social contact and loneliness have a negative impact on both mental and physical health. One way to understand the amount and types of social connections someone has is to map their personal social network. This might include a whole range of people such as important family, friends, neighbours and acquaintances, pets, community places, groups or activities. This helps people to think about who is important in their daily lives, the roles that different relationships play, how this might have changed over time and how this might be improved, for example, by exploring ways to obtain additional support in the future. In this study we will invite older adults who have participated in a linked study to take part in an interview. The linked study will follow-up older adults with AUD for 6 months after being admitted into hospital. The people invited to this study will be selected based on lots of different factors, such as their age, how many people they live with, or how lonely they are, to ensure we are able to capture a variety of experiences within this group. Only those who have given permission to be contacted will be approached. The interviews will be 1:1 with a researcher and might happen in person, over the phone or through an online video call. Participants will first be guided through the process of mapping their current social network with the researcher. The interview will then discuss the support received from the person’s social network, as well as talking about the participants’ daily lives (including daily routines, physical and mental wellbeing and valued activities) and additional support needs. Interviews will last around 1 hour. They will be audio-recorded, transcribed and anonymised before analysis. Plain English summary of findings Recruitment to the study was difficult. Many patients who were identified as drinking at increasing or possibly dependent levels did not have mental capacity to take part. Of those who were eligible, a large percentage declined to participate. This resulted in a small sample size of 30, 16 of which completed their follow-up questionnaire, and 7 interviews. 20% of the sample died during the study window. Results indicated: Over 50% participants showed some level of cognitive impairment Participants had an average of 4 people in their social network; usually family members Interviews revealed links between social isolation, loneliness and drinking alcohol Those who were housebound reported drinking alcohol all day long Participants stated alcohol is not, and never has been a problem for them 50% participants met the threshold for depression Participants often provided conflicting information for the follow-up questions and in the interviews Participants had poor diets; of 32 nutrients measured 22 were not consumed in-line with the government recommendations 93% participants were taking 5 medications or more What did we do with this? As a small preliminary study the new knowledge has been used to inform future research. Impact on patient care and population health will come from the future research. Recruitment was harder than expected. This learning point has informed recruitment and retention procedures in future research applications. Other findings, for example, the link described qualitatively between social isolation and increased alcohol consumption, has shaped ideas for intervention development. What's next? We have formed a stakeholder group to discuss our findings and what the most appropriate next steps should be. We are preparing an application to undertake the planning and developmental work for an intervention aimed at reducing alcohol consumption in a general population of adults aged 65 and over. We plan to test the feasibility of this intervention in a feasibility study.

a8af900b-b089-4b7b-8da9-b042b753eab0 The feasibility of community pharmacies testing for Hepatitis C in people who inject image and performance enhancing drugs Principal Investigators: Dr Ryan Buchanan Team members: Dr Ryan Buchanan (Academic Clinical Lecturer Hepatology, Faculty of Medicine, University of Southampton), Professor Salim Khakoo (Professor of Hepatology, Faculty of Medicine, University of Southampton), Dr Charlotte Cook (Hepatology Research Fellow, University Hospital Southampton), Dr Mark Wright (University Hospital Southampton NHS Foundation Trust), Charlotte Matthews (Southampton City Council), Dr Gemma Ward (Public Health England) , Colin McAllister (Southampton City CCG), Stuart Smith ( Hepatitis C Trust ), Mark Wright (NHS England, Wessex Operational Delivery Network for Hepatitis C ), Pamela Campbell (Solent NHS Trust, Homeless Healthcare Team) Start: 1 December 2019 Ends: 1 January 2024 Project Partners : University of Southampton, University Hospital Southampton NHS Foundation Trust, Solent NHS Trust, NHS England, Public Health England, Southampton City CCG, Southampton City Council, Hepatitis C Trust. Lay summary: The people at highest risk of Hepatitis C (HCV) in the United Kingdom (UK) are those who are sharing needles, syringes or injecting equipment. This includes people who inject performance and image enhancing drugs (PIEDs) such as steroids.This population are high users of needle and syringe programmes, however, the risks taken by this population and their access to testing for HCV are poorly understood. The information that is available is not consistent, with the proportion of people with HCV varying widely but may be as high as one in seven PIED users. The study has been discussed in detail with bodybuilders, a gym owner, pharmacists and people who work at needle and syringe programmes (NSPs). The bodybuilders were very keen to be involved in the study as they want to have accurate, scientifically performed studies. They feel strongly that the information that is out there currently is not representative of their community that use PIEDs. They also felt that it was important that to have a focus on HCV but they were keen to be involved in a study that also addresses at other elements of liver health. The methodology for the study were discussed and adapted after patient and public involvement (PPI) meetings.The aim of this study is to see if widening access to testing of HCV based in community pharmacies with a pathway into specialist care is able to provide improved and acceptable access to testing and treatment compared with standard care. We also want to gain a better understanding of the burden of HCV in this group of people who are using PIEDs, and an understanding of risk behaviours. We will also investigate knowledge of liver disease caused by other factors (e.g. alcohol and obesity). This will be done via interviews with bodybuilders to understand more about their behaviour and the risks they take. This will be followed by a survey with an associated HCV test and measurement of liver scarring. The information gained from the interviews, surveys and tests will give a far greater understanding of this population and their risk of HCV. This information can then be used to target at-risk groups and to adapt current approaches with the aim of elimination. The results will be disseminated in medical journals and presented at medical conferences. Publications doi.org/10.1111/jvh.13207 https://doi.org/10.1111/jvh.13554 https://doi.org/10.1093/ijpp/riac064 http://dx.doi.org/10.1136/gutjnl-2022-BASL.130 http://dx.doi.org/10.1136/gutjnl-2021-BASL.40 https://doi.org/10.1111/jvh.13786 https://doi.org/10.1016/S0168-8278(20)32040-7

c8454e17-14f6-4e3b-b8ba-8a5db14fcdcd Gambling and Alcohol Use Addiction in Military Veterans Chief Investigator: Professor Sam Chamberlain , Head of Department, Department of Psychiatry, Faculty of Medicine, University of Southampton; Honorary Consultant Psychiatrist and Service Director, Southern Gambling Clinic, Hampshire and Isle of Wight Healthcare NHS Foundation Trust; Mental Health Research Hub Lead, ARC Wessex, University of Southampton; Sam.chamberlain@soton.ac.uk Co-Investigators: · Dr Skaiste Linceviciute , Research Fellow, ARC Wessex, University of Southampton; s.linceviciute@soton.ac.uk · Dr Konstantinos Ioannidis , Consultant Psychiatrist and Clinical Lead of the Southern Gambling Service, Hampshire and Isle of Wight Healthcare NHS Foundation Trust; Honorary Associate Professor at the Department of Psychiatry, Faculty of Medicine, University of Southampton; k.ioannidis@soton.ac.uk Partners: Dorset Integrated Care Board, Hampshire and Isle of Wight Integrated Care Board, Hampshire and Isle of Wight NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, Southampton City Council, Health Innovation Wessex, CNWL NHS Trust, National NHS Gambling Clinic London, Avon and Wiltshire Partnership NHS Foundation Trust, South West NHS Gambling Service, Swansea University, Gambling in Armed Forces research group, Royal Navy, Southampton City Council, Stronger Communities, Southampton Armed Forces Covenant, Eling Royal British Legion branch, Southampton Voluntary Services, HIOWH NHS Armed Forces Network, The Society of St James, Parent Support Link, Veterans Outreach Support. Start: 1 December 2024 End: 31 March 2026 Summary Military veterans are more likely to develop gambling problems than the general public, but far fewer seek help than expected. In the Wessex region there are over 100,000 serving/retired military personnel, yet, our regional addiction services report low levels of veteran personnel referrals. While there may be several barriers stopping veterans from getting help, many veterans might reach a crisis point showing the urgent need for action. Informed by extensive stakeholder consultation with regional addiction services, individuals with lived experience and training, and with experts from the Armed Forces community, a need has emerged to carry out explorative research and community partnership building on understanding the extent of engagement in accessing treatment and support for gambling with/without alcohol problems for military veterans and learn how this knowledge can enable improvement in this area. To date we have: 1. Brought together an engaged and active stakeholder group of experts by experience and training in this field; including veterans, family members of those affected, representatives from veteran charities and groups, the wider support services for the Armed Forces community, and academics who informed our research planning and supported engagement. 2. Public and community involvement was an embodied element in this study that guided decision making and supported multidisciplinary partnership building in the wider community. In response to lower rates of participation, we have undertaken additional PPIE engagement activities to understand the underlying barriers and challenges in health research recruitment and retention that affects this population. This included flexible, multi-modal approach of engagement that identified recommendations for how researchers could better engage with military veterans. 3. We are interviewing military veterans with a lived experience of gambling problems to explore gambling treatment and support-seeking experiences, both successful and unsuccessful, across diverse veterans population in Wessex. By identifying common thematic experiences of this group, we aim to provide a deeper understanding of the lived experience with gambling problems and help-seeking in military veterans, and offer insights for region services supporting this population. These strands of work are supporting necessary evidence gathering and partnership infrastructure building which are needed for informing the planning of further work in this area.

35fc5ade-22b2-4685-9329-21c42b28a888 Testing the living with chronic illness scale Validation of the living with chronic illness scale in an English-speaking population with Long-term conditions Principal Investigator: Professor Mari-Carmen Portillo (Professor of Long-Term Conditions. School of Health Sciences. University of Southampton) Team members: Dr Kelly Hislop-Lennie (Principal Investigator). Senior Lecturer in Adult Nursing. University of Bournemouth. Dr Leire Ambrosio. Senior Research Fellow. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton. Ms Hannah Barker. PhD student at the School of Geography, University of Southampton. Dr David Culliford. Principal Research Fellow and Senior Medical Statistician. School of Health Sciences, University of Southampton. Dr Emily Arden-Close. Principal Academic in the Department of Psychology, Bournemouth University. Dr Jo Hope. Lecturer. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton. Dr James Bennet. Primary Care Research Locality Lead, Clinical Research Network Wessex. Dr Simon Fraser. Associate Professor of Public Health. University of Southampton Dr Corine Driessens. Senior Research Fellow in Statistics. NIHR Applied Research Collaboration Wessex, University of Southampton. Dr Nestor Serrano-Fuentes. Senior Research Fellow. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton. Start: 1 October 2019 Ends: 30 September 2021 Project Partners: Clinical Research Network (CRN) Wessex, Primary Care Dorset, Bournemouth University, University Hospital Southampton NHS Foundation Trust NHS: Alresford Surgery. Alresford, Angel Hill Surgery. Bury St. Edmunds, Banbury Cross Health Centre. Oxfordshire, Buchanan Road Surgery. Sheffield, Buttercross Health Centre. Somerton, Glastonbury Health Centre. Glastonbury, Heeley Green Surgery. Sheffield, Ixworth Surgery. Ixworth, Newquay Health Centre. Newquay, Oaks Healthcare. Waterlooville, Park Road Surgery. Teddington, Rosedale Surgery. Lowestoft, Shreeji Medical Centre. Slough, Swanage Health Centre. Swanage, The Park Medical Practice. Shepton Mallet, Trafalgar Medical Group Practice. Portsmouth, Wareham Surgery. Wareham, White Horse Medical Practice. Faringdon. Charity Partners: Parkinson’s UK , Diabetes UK and Asthma UK What did we find out? The scale successfully measures individuals’ experiences of living with one or more long-term conditions We found that the scale was acceptable to 577 people from the United Kingdom living with different long-term conditions. The results recommend shortening the original version of the scale for better use in clinical practice. What difference can this new knowledge make? The scale does not focus on the disease but on how the person lives with the disease; therefore, identifying physical, emotional, spiritual, and social complex needs and what is meaningful and relevant to people. Utilising the scale as an assessment and diagnostic tool in primary care could result in better health care. For example, it could support the development of more comprehensive and individualised care plans, a more effective and directed referral to specialists and community support groups, and regular monitoring. Its use could bridge health and social care services, developing and evaluating care pathways based on the commonalities across conditions (not medical diagnosis), and improving patient experience. Why is this important? This work has led to a new understanding of key elements that health and social care interventions must address to improve the lives of people living with long-term conditions. It highlights the need to focus on capturing the things that matter to people living with one or more long-term conditions in the UK. What next? The next step is to carry out a feasibility implementation study of the scale in clinical practice, particularly for people living with type 2 diabetes. The use of this scale in clinical practice has the potential to improve the daily lives of people with multiple conditions, improving their quality of life and well-being. It can also help improve referral processes and coordinate care. Outputs from research: Ambrosio, L., Hislop-Lennie, K., Serrano-Fuentes, N., Driessens, C., & Portillo, M. C. (2023). First validation study of the living with long term conditions scale (LwLTCs) among English-speaking population living with Parkinson's disease. Health and quality of life outcomes, 21(1), 69. https://doi.org/10.1186/s12955-023-02154-6 Ambrosio, L., Hislop-Lennie, K., Barker, H., Culliford, D., & Portillo, M. C. (2021). Living with Long term condition Scale: A pilot validation study of a new person centred tool in the UK. Nursing open, 8(4), 1909–1919. https://doi.org/10.1002/nop2.859 Ambrosio L, Navarta-Sánchez MV, Portillo MC, Martin-Lanas R, Recio M, Riverol M. Psychosocial Adjustment to Illness Scale in family caregivers of patients with Parkinson's Disease: Spanish validation study. Health Soc Care Community. 2021 Jul;29(4):1030-1040. https://doi.org/10.1111/hsc.13137 Ambrosio L, Hislop-Lennie K, Serrano-Fuentes N, Driessens C, Portillo MC. Psychometric properties of the living with long term conditions scale in an English-speaking population living with long term conditions in the UK. BMJ Open. 2024 Jan 10;14(1):e077978. https://doi.org/10.1136/bmjopen-2023-077978 Background and origina lay summary Long term conditions (LTCs) are a worldwide challenge because of their complications, increasing numbers, costs and impact on people’s lives. In order to develop interventions that improve the adaptation to illness and quality of life, we need appropriate, reliable and valid tools, which reflect cultural and language diversities and individual needs. This would benefit both patients and health/social care professionals in the management of LTC, by allowing the patients a way to express their needs and therefore, allow the health/social care professional to direct the patient to specific, relevant resources. The present study aims to produce an English version of the Living with Chronic Illness Scale and establish if it can be useful and applicable to English speaking people with LTCs in the UK. The Living with Chronic Illness Scale is the only available tool, which comprehensively evaluates the experience of living with a long-term condition, focusing on the person and not on the disease. This scale was created after previous research, and successfully used with people with Parkinson’s Disease from Spain and South America, in Spanish. In this study we will first translate the Spanish version of the scale into English, making any necessary cultural changes. After this, we will test the understanding of the approved English version with 15 people with LTCs. Then, we will use the final English version of the scale with at least 1,650 people with different LTCs in community settings from Wessex. Apart from the Living with Chronic Illness Scale, we will ask participants about perceived social support, life satisfaction, quality of life, and the perceived severity of their LTC(s), using tools for English speakers. Finally, 2 discussion groups will take place with people with LTC, 2 with family-carers and 2 with health professionals to explore and compare their views about the usefulness of this scale in the daily management of LTC. People with long-term conditions and associations have contributed to the choice of topic, research and dissemination plan.

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8d1b2f3a-906f-4fe9-8d9a-bf4679c7d6ec StOP UTI project: Strategies in older people's care settings to prevent infection Background Urinary tract infection is more common in older people living in care homes but can be difficult to recognise. This can lead to overuse of antibiotics and may result in antibiotic-resistant infection and hospital admission. We wanted to find out what can work in care homes to prevent and recognise UTI and what support care home staff need to enable safe care for all residents. What we did We reviewed evidence from a range of sources, including research studies and improvement projects. We also asked care home staff, residents, family carers and healthcare professionals about their experiences. We combined these experiences and ideas with the evidence we found from published literature to develop an understanding of what needs to happen in care homes for older people to prevent and recognise UTI. What we found out What difference will this make? UTI can be prevented by embedding prevention activities in care routines: ensuring residents are hydrated ensuring residents with recurrent UTI are managed actively with preventative treatment avoiding the use of urinary catheters wherever possible Unnecessary antibiotic use can be avoided by: involving the whole care team, resident and family in recognising UTI using active monitoring when there is uncertainty about UTI supporting care staff to develop the skills to accurately recognise UTI using tools that support decision-making and communication across the wider care team Safe care for each resident can be achieved when: care staff receive education that is contextualised to their role and helps them to prioritise and deliver person-centred care care home managers are committed to supporting the delivery of best practice commissioners and regulators promote UTI prevention and recognition as a priority area for care homes Why is this important? Our findings suggest ways that care home providers and policy makers can support the prevention and recognition of UTI in the care of older people living in care homes. A system-wide approach is vital to enable care home managers and their staff to prioritise UTI prevention and recognition as part of person-centred care. At policy level, there is a need to integrate UTI prevention with diagnostic and antimicrobial stewardship and to unify the content of education and decision-support resources so that care staff can see the value of their role in prevention as well as supporting diagnosis and treatment of UTI. What next? Our research is the start of a process of understanding what works in care home settings and will identify where further research is needed. A report, summary and articles provide practical examples and recommendations relevant to care home staff, care home managers, researchers, educators, carers and relatives for use to improve the prevention and recognition of UTI in older people’s long-term care and to plan further research to investigate them. We are turning our findings into a range of different resources and digital communications, with input from experts who support the adoption and spread of innovation, for sharing via care home networks and associations. Publications Realist synthesis protocol for understanding which strategies are effective to prevent urinary tract infection in older people in care homes Preventing urinary tract infection in older people living in care homes: the ‘StOP UTI’ realist synthesis | BMJ Quality & Safety Strategies for older people living in care homes to prevent urinary tract infection: the StOP UTI realist synthesis | NIHR Journals Library Link to University of Southampton site Research team: • Dr Jacqui Prieto, Joint Chief Investigator, University of Southampton • Professor Heather Loveday, Joint Chief Investigator, University of West London • Professor Jennie Wilson, Co-investigator, University of West London • Mrs Alison Tingle, Co-investigator, University of West London • Mrs Emily Cooper, Co-investigator, UK Health Security Agency • Dr Melanie Handley, Co-investigator, University of Hertfordshire • Professor Jo Rycroft-Malone, Co-investigator, University of Lancaster • Dr Lynne Williams, Co-investigator, Bangor University • Mrs Jennifer Bostock, Co-investigator, Patient and public involvement • Lois Woods, Information Specialist, University of Southampton • Simon Briscoe, Information Specialist, University of Exeter • Jemima Kakpa, Research assistant, University of Southampton • Christine Logan, Administrative assistant, University of West London Project Advisory Group: • Jennifer Bostock (Chair) • Professor Lona Mody • Mr Mark Stott • Dr Leah Jones • Mrs Susan Bennett • Mr James McMahon • Mrs Annabelle Stigwood • Mrs Anita Astles

9ae71e9b-aaf2-477f-a174-17b115a2513a ADOPTED PROJECT: Neuro LTC: Assessing Baseline Factors, Critical Events and Fatigue in Long Term Neurological Conditions Principal Investigator: Dr Chris Kipps, Neurologist and Hon Senior Lecturer, University of Southampton Team Members: Dr Helen Roberts Veena Agarwal Dr John Spreadbury Dr Emma Stack Dr Sarah Fearn Prof. Ann Ashburn Start Date: 23/08/17 End Date: 31/12/22 Project Funder: University Hospital Southampton NHS Foundation Trust Lay Summary Many neurological conditions have a long-term impact on quality of life with varying requirements for intervention and care over time. This has the potential to create a mismatch between the needs of patients at particular stages in their illness, and the skill levels of clinicians and available resources required to assist them appropriately. This project aims to identify the factors that influence everyday care requirements (baseline factors) and to identify the critical events that have the potential to lead to an increase in care requirements. In many neurological conditions, there may also be ‘hidden’, less evident or more subjectively perceived factors that influence care requirements, of which fatigue may be amongst the most common. Thus, this project also includes research into the prevalence and effects of fatigue in neurological conditions. By identifying and better understanding baseline factors, critical events and the features of fatigue in long term neurological conditions, this project will help to enable future research to stratify long-term neurological conditions by the degree of complexity and individual burden and match service users more effectively to appropriate clinical and social care resources. Method The research will focus on the following five neurological conditions: epilepsy, Huntington's disease, motor neurone disease, multiple sclerosis, and Parkinson's disease. The study will involve the use of mixed methods. We will use surveys and focus groups with service users (patients and caregivers) to identify the factors that help to maintain an individual’s optimal level of living with the neurological condition (baseline factors), the critical events that can cause a change in care requirements in each of the five neurological conditions, and the impact of fatigue. What did we learn? 1. What factors affect the care that people living with a neurological condition require? We found that mobility was the most important factor for assessing care needs from the patient perspective. This was followed by dexterity, eating and drinking, speech and communication, cognitive impairment and mental health. This order of relative importance was found to be constant by age, disease progression, gender, living alone, or presence of co-morbidities. However, younger patients, more progressed patients, females, those living alone and those with co-morbidities tended to produce higher average scores of importance, meaning they felt their symptoms in these areas had a higher impact on their care needs. We asked participants what helped them to manage their condition and live well. The most important factors were: Social support, exercise, lifestyle factors and supportive equipment. Less recognised factors such as access to healthcare professionals, the patient’s mentality and diet were also noted. We found that recently diagnosed patients cited ‘employment’ and ‘feeling informed’ more frequently, whilst less recently diagnosed patients mentioned ‘having a carer’ and ‘getting out of the house’ more frequently. 2. What events lead to an unplanned GP or hospital visit for people living with a neurological condition? We found that there are specific events that are likely to lead to an unplanned GP or hospital visit for people with neurological conditions. In addition to well-recognised causes of crisis such as falls, trigger events less widely associated with crisis were identified, including difficulties with activities of daily living and carer absence. The less-recognised trigger events tended to be managed more frequently in the community. Many of these community-based crises had a greater impact on care needs than the better-known causes of crisis that more frequently required hospital care. Patient and carer responses indicated a good general knowledge of potential crisis triggers. Patients were more aware of mental health issues, and carers were more aware of cognitive impairment and issues with medications. 3. What is the frequency and impact of fatigue for people living with neurological conditions? We found that the prevalence of clinically significant fatigue across five neurological conditions (Parkinson’s, MS, epilepsy, MND and Huntington’s disease) was 51%. The highest prevalence of fatigue was amongst people with MS and MND, and lowest was amongst people with epilepsy. More than a third of participants reported that fatigue frequently impacted their social life and ability to concentrate. Factors associated with clinically significant fatigue were male gender, age, frequency of fatigue greater than twice a week and fatigue often having a detrimental effect on social life. What difference can this new knowledge make? Understanding the factors that affect the care needs of people living with neurological conditions can help to ensure care resources are targeted at those most at risk of high care needs. Understanding that younger patients, more progressed patients, females, those living alone and those with co-morbidities generally considered their symptoms to have a higher impact on their care needs, can allow us to target these patients with relevant support and interventions. Identifying the most important factors for people with neurological conditions to self-manage their conditions and live well can enable us to share this information more widely and promote self-management tools and techniques amongst this population. By increasing understanding of events that lead to a GP or hospital visit, we can better inform strategies to prevent them. Similarly, by identifying under-recognised crisis triggers we can build a better understanding of ‘risk factors’ for an unplanned GP visit or hospital admission. Identifying that Patients were more aware of mental health issues, and carers were more aware of cognitive impairment and issues with medications means that we can ensure healthcare professionals are asking the right questions to the right person. We also noted some differences in how patients and clinicians describe the events that precede a GP or hospital visit. This can help to ensure healthcare professionals are using the right language when assessing the risk of individual patients. By increasing understanding of events that lead to a GP or hospital visit, we can better inform strategies to prevent them. Similarly, by identifying under-recognised crisis triggers we can build a better understanding of ‘risk factors’ for an unplanned GP visit or hospital admission. Identifying that patients were more aware of mental health issues, and carers were more aware of cognitive impairment and issues with medications means that we can ensure healthcare professionals are asking the right questions to the right person. We also noted some differences in how patients and clinicians describe the events that precede a GP or hospital visit. This can help to ensure healthcare professionals are using the right language when assessing the risk of individual patients. Why is this important? The number of people with a neurological condition is rising, with around 17 million cases in the UK. Approximately 4% of NHS funding goes to neurology care. People with a neurological condition are more at risk of unplanned hospital visits and admissions than many other groups. Identifying factors that promote self-management and well-being could improve patient diagnosis and quality of life, reducing care requirements from the NHS. Reducing unplanned GP and hospital visits could improve patient quality of life and reduce resources spent by the NHS. Identifying the frequency and impact of fatigue and ways to manage it could improve patient and reduce resources spent by the NHS. What Next? We have already taken some of the findings from this study to: -Publish academic publications -Present at medical conferences -Present to groups of people with neurological conditions -Present to national support organisations -Create an impact inventory for neurological pathways -Create questionnaires that aim to identify those most at risk of an unplanned GP or hospital visit (implemented through My Medical Record) We are continuing to analyse the data and disseminate findings to a wide audience. Publications The Causes and Impact of Crisis for People with Parkinson’s Disease: A Patient and Carer Perspective - Sarah Fearn, Sandra Bartolomeu Pires, Veena Agarwal, Helen C. Roberts, John Spreadbury, Christopher Kipps, 2021

d7cea2fb-fab3-4e8d-86f6-e2d2952f0404 ADOPTED: Nurture-U (Southampton): A longitudinal survey for student metal health and wellbeing Principal Investigator: Lucy Dorey Start Date: 1 July 2021 End Date: 1 July 2025 Background: Promoting good mental health within university students is a priority. Anxiety, depression and self-harm are rapidly increasing. University mental health services report demand beyond their capacity. Effective ways to prevent student mental difficulties are urgently needed. Further, university should be a positive life experience and promote students' emotional fitness and ability to thrive. Research and student feedback recommend changing university culture, environment and teaching to promote wellbeing. Stepped care in which students move through different steps based on need is also suggested to improve student wellbeing and service capacity. This starts with wellbeing promotion and prevention for all students, steps up to self-help for those with mild symptoms and to professional support for those with elevated symptoms. However, these approaches have not been rigorously tested in universities. We don't know which elements best promote good student mental health. We don't know what approaches work best for the diverse student body across gender, ethnicity, sexuality, sociodemographic background. We will test initiatives within the university environment and at each of the steps, see which initiatives students use, how well they work, and identify which work best for which students across diverse groups. Students will be active partners in shaping, delivering and evaluating all research. We will use repeated twice-yearly online surveys across 6 universities (110k undergraduates) to assess student wellbeing and mental health and understand what helps or hinders students seeking and getting help. A digital self-monitoring tool allows students to track their wellbeing, stress, and what support they use over time so we can map how they move through stepped care and how different steps interact with each other. To test whether changing university environment promotes wellbeing, first we will evaluate embedding compassion into education: teaching about diversity and mental health, practising kindness and understanding for self and others, and making assessment more flexible and responsive to students. Focus groups will explore how students experience this approach. Second, we will introduce a voluntary online mental health literacy course for first year undergraduates that teaches what influences mental health, how to promote wellbeing and how to seek help. Surveys before and after the course will test if it increases students' knowledge, healthy behaviours, helps-seeking and wellbeing. To better understand how to make self-help work for students, randomised trials will test book-based guided self-help to build personal strengths, unguided digital self-help to prevent depression in high-worrying students and digital self-help for depression and anxiety. We will compare supported versus unsupported digital cognitive-behavioural therapy, meditation and peer support apps to find out which app(s) students find most acceptable and explore which students most benefit from. We will test self-help with and without support because unsupported self-help can reach vastly more people and there is uncertainty about whether and for whom supported self-help is more effective. To improve the efficiency of student mental health services, we will test if adding a digital self-monitoring tool shared between student and clinician improves student experience and time to recovery by enabling care to be more proactive and responsive (e.g., more frequent meetings if symptoms rise). From this research, we will develop an evidence-based integrated model of inclusive and acceptable student wellbeing and mental health support. In partnership with students and university leaders, this model will inform policy recommendations. We will develop guidance, courses and tools to promote student wellbeing that are easily added to existing systems or that use tried-and-tested low-cost technology to ease their adoption and ongoing use.