257ff9a8-4656-4b12-a5fc-4ef46bb650ab 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

a95fe10a-8d2a-464a-8d99-2e3067bb89e8 ADOPTED PROJECT: ExACT-CF: Exercise as an Airway Clearance Technique in people with Cystic Fibrosis – A randomised pilot trial ADOPTED PROJECT: ExACT-CF: Exercise as an Airway Clearance Technique in people with Cystic Fibrosis – A randomised pilot trial Principal Investigators: Dr Don Urquhart , Dr Zoe Saynor Co Applicants : Mrs Lorna Allen (Cystic Fibrosis Trust), Professor Steve Cunningham, Professor Ioannis Vogiatzis , Professor Steff Lewis, Ms Aileen Neilson Partners: University of Portsmouth, University Hospital Southampton NHS Foundation Trust, University of Edinburgh, University of Northumbria at Newcastle, Cystic Fibrosis Trust, CF Warriors (Charity) Starts: May 2022 Ends: 31 October 2023 Background: Cystic fibrosis (CF) is the UK’s most common inherited genetic condition and affects more than 10,500 people. The disease causes problems with the movement of salt and water in the body, resulting in sticky mucus building up, mostly in the lungs and gut. Thick mucus in the airways leads to repeated infections which, over time, damage the lungs. Chest physiotherapy is prescribed to loosen and clear sticky thick mucus from the airways and so to help to reduce lung infection. Chest physiotherapy is a routine treatment to keep people with CF healthy. However, many say it is time consuming and a burden. People with CF have asked if doing exercise could have the same effect as chest physiotherapy sessions for helping clear mucus. Exercise could be more enjoyable and less burdensome. Through a recognised priority setting partnership, the CF community recently ranked research to ‘reduce the burden of their care’ and answer ‘whether exercise can replace chest physiotherapy’, as their number 1 and 7 priorities. Surveys show that many people with CF have occasionally chosen to replace chest physiotherapy with exercise for airway clearance, and we recently confirmed this through a UK-wide survey. We now need to know if they would be willing to take part in research that asks some to stop chest physiotherapy and to exercise (with coughs and huffs) instead. New medicine (modulators) have recently become available for many people with CF, bringing dramatic improvements in their health. Some people who have started modulators are considering whether they can reduce or stop treatments – including chest physiotherapy. So, we need to know the effects of stopping chest physiotherapy and determine if exercise can be used instead - our study aims to understand this. Our recent survey in people with CF, their families, physiotherapists and doctors, showed us that many consider hard exercise with coughs and huffs to be able to clear mucus from the airways. We will study 50 people with CF (>12 years old) for 28-days. We will ask half of them to continue their usual care, and half to stop chest physiotherapy and do exercise that gets them breathing deeply (with coughs and huffs) instead. We will see if people are willing to start and continue with such a study and what they think of the study processes. We will also see how stopping chest physiotherapy and replacing it with exercise affects measurements of their lung function. Within the study we will talk with people with CF and members of their CF team to understand their experiences. This information will tell us whether a larger study can answer Publications Safety, feasibility and efficacy of exercise as an airway clearance technique in cystic fibrosis: a randomised pilot feasibility trial | Thorax

80c8b1b5-2419-49ee-b01f-71cd4ac37e9f ARC Wessex programme of research on Medicines Optimisation (MODIFY SPiDeR STOP-DEM) For further information please see the links below MODIFY : The development and iMplementation Of a multidisciplinary medication review and Deprescribing Intervention among Frail older people in primarY care SPiDeR Social Prescribers In Deprescribing Role STOP-DEM : Development of a structured deprescribing intervention for people with dementia or mild cognitive impairment in primary care

b369496b-453f-489e-9d44-7a954ac3f6d7 Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways (STIMULATE) This project is part of a national consortium Contact: Professor Nisreen Alwan MBE , University of Southampton There is evidence that access to Long Covid (Post Covid-19 Syndrome) NHS Care and related care pathways, the nature of those pathways, and patient experience, varies. Research is required to inform diagnosis, care, public health strategies, policy planning, resource allocation and budgeting. It is likewise essential to define the usual care pathway in Post Covid services, and to understand patient presentation, and the effectiveness and cost of care. The STIMULATE-ICP consortium includes: University College London Hospitals NHS Trust, University College London, University of Central Lancashire, LongCovidSOS, UK Doctors #Longcovid , Royal College of General Practitioners, University of Liverpool, Liverpool University Hospitals Foundation Trust, Perspectum, Living With, University of Hull, Hull University Teaching Hospitals Trust, University of York, University of Leicester, University of Exeter, University of Southampton, University of Sussex, Alliance Medical, GE Healthcare, Olink, Francis Crick Institute, NIHR Applied Research Collaboration South West Peninsula, NIHR Applied Research Collaboration East Midlands, NIHR Applied Research Collaboration North Thames, NIHR Applied Research Collaboration Yorkshire and Humber, NIHR Applied Research Collaboration North West Coast, British Heart Foundation Data Science Centre, BHF Data Science Centre, Health Data Research UK, Office of National Statistics, Royal Devon and Exeter NHS Trust, as well as NIHR Clinical Research Network support. Plain English Summary of the health inequalities work within STIMUALTE-ICP: 23 interviews were completed with people with probable Long Covid We found… There was a lack of awareness of Long Covid, its symptoms and the support available for people with Long Covid An assumed lack of awareness of Long Covid within healthcare People with Long Covid symptoms experienced doubt and uncertainty about the cause of their symptoms Experiences of stigma and discrimination were commonly experienced by people with probable Long Covid. This included experiences of age and gender discrimination, experiences of being dismissed, unsympathetic attitudes and social exclusion. People with probable Long Covid reported feeling embarrassment, feeling tainted and/or different to others because of their Long Covid symptoms. In addition, they expected disbelief and/or judgement from others because of Long Covid People with Long Covid were sometimes reluctant to seek care due to worries surrounding possible investigations and medications, or worries about symptoms being wholly attributed to mental health conditions. There were also concerns about burdening the NHS. The nature of Long Covid symptoms made accessing care difficult. Long Covid symptoms can often come and go or fluctuate, and sometimes one symptom may be more prominent than others. This can mean some symptoms can be overlooked by patients and healthcare professionals. Experiences of people with Long Covid are also constitute epistemic injustice, or inequality surrounding creating, interpreting and conveying knowledge. This is due to the lack of awareness and knowledge of Long Covid both in the community and within healthcare. The findings are published here https://onlinelibrary.wiley.com/doi/abs/10.1111/hex.14037 Our recommendations: What we did Research findings from this study and the NIHR funded HICOVE study have been translated into an easily-usable webtool. This tool aims to encourage people with probable Long Covid who have not yet sought help and support from the NHS or other services to do so. It covers topics of self-doubt, stigma and effects on mental health as well as offering resources, tips, and advice on next steps. This tool is primarily aimed at people who may have Long Covid but are not currently accessing care but may also be helpful to those who are. It is also aimed at healthcare professionals, social prescribers, as well as community organisations to raise awareness about the difficulties and stigma people, particularly those from disadvantaged backgrounds, may face when considering reaching out for a consultation or community support. The webtool is available here: Supporting Long Covid Care ( long-covid-care.org.uk ) Where next? We are working on disseminating the Supporting Long Covid Care webtool as widely as possible and evaluating so that we improve it further. See our news article

862768fa-36ea-4f23-802a-07ca10e5572b Social Prescribing Link Workers framework: supporting complex needs of adults living with physical and mental health long term conditions Chief Investigators: Dr Leire Ambrosio. Lecturer. School of Health Sciences, University of Southampton and Mari Carmen Portillo. Professor of Long-term Conditions. School of Health Sciences, University of Southampto. Team: Skaiste Linceviciute. Research Fellow. Faculty of Medicine, University of Southampton, David Baldwin. Professor of Psychiatry and Section Head, Clinical Neuroscience, Faculty of Medicine, University of Southampton Joseph Jenness. Senior Manager at Southampton Voluntary Services. SO:Linked Jade Topham. Social Prescribing Link Worker, Southampton North PCN William Barnaby Jones. NIHR ARC Wessex PPIE, University of Southampton Traci Carroll. PPIE Representative as part of the NIHR ARC Wessex PPIE group, University of Southampton Siân Brand. Chair of Social Prescribing Network, Social Prescribing Network Partners: Hampshire and Isle of Wight Integrated Care Board, Hampshire and Isle of Wight NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, University of Southampton, Anxiety UK, Social Prescribing Network, SO: Linked. Start: 1 October 2024 End: 31 March 2026 Background to the research As part of the NHS Long Term Plan in rolling out an integrated approach built around personalised care, NHS England has initiated the Social Prescribing Link Workers (SPLW) model to offer personalised support for patients in primary care facing continued pressures with long-term conditions, and to bridge fragmented healthcare systems with key community stakeholders through joined-up approaches (NHS, 2019). Our recent SPLW project demonstrated that despite Link Workers’ positive and multifaceted impact, the current efforts lack standardised approach and robust guidance that delay and complicate the work of SPLWs in delivering coordinated support for addressing the needs of adults with long-term physical and mental health conditions. Key challenges related to the lack of collaborative planning, expectations management, and limited communication with multidisciplinary teams. This leaves SPLWs managing complex cases with overstretched workload and with patients struggling to achieve sustainable, long-term support for the management of their physical and mental health LTCs. Aims of the research Informed by the findings of our previous SPLW project, a need has emerged to develop a consistent SPLW framework that sets out sustainable and integrated pathway that can optimise social prescribing services in the community, standardise guidance for training support and is equipped to support the long-term management of complex needs of adults with physical and mental health LTCs. Publications Understanding the potential role of Social Prescribing Link Workers in supporting identified needs of people with physical and mental long-term conditions: a qualitative study | BMC Primary Care | Full Text

c3f60ada-92b2-427a-992e-e9d18e00b011 ADOPTED: Mobility assessments in hospitalised older adults: study protocol for an e-survey of UK healthcare professionals PhD Candidate: Catherine Wharfe University of Portsmouth; Team: Maria Perissiou University of Portsmouth; Zoe Saynor University of Portsmouth; Jim Briggs University of Portsmouth; Carolina Gonçalves University of Portsmouth & University Hospitals Sussex NHS Foundation Trust Start : 1/11/2023 Ends: 1/05/2025 Abstract Hospitalisation in acute care poses a significant risk of adverse outcomes in older adults, including loss of functional independence, disability, and death. Research carried out in hospitalised older adults suggests functional mobility tools or scales can predict adverse events and care needs in this population, which facilitates prompt escalation of care and discharge planning procedures. As such, a need to develop a standardised methodology for assessing or measuring mobility has been recognised. However, the degree to which standardised mobility tools are routinely used, how data is collected, and/or which clinical assessment processes are utilised in hospitals across the UK is currently lacking. The aim of this national survey is to identify the current practice of mobility assessment in older adults admitted to NHS Trusts and Private Health Organisations, with a view to informing further research on a standardised approach or best practice guidelines to assessing or measuring mobility in hospitalised older adults.

fa252260-9b08-4bee-8ac4-2e68a124d401 Qualitative Data Preservation and Sharing (Q-DaPS) Principal Investigators: Prof. Fiona Stevenson ,, Professor of Medical Sociology, University College London, Head of the Research Department of Primary Care and Population Health; Prof. Geraldine Leydon-Hudson , , Professor of Primary Care Research, University of Southampton . Co-applicants: Dr Barbara Caddick Senior Research Associate in Primary Care and Honorary Senior Research Associate Department of History, University of Bristol; Dr Rebecca Barnes , Senior Qualitative Researcher, University of Oxford; Prof Carolyn Chew-Graham , Professor of General Practice Research, Keele University; Prof Sue Latter , Professor of Health Services Research, University of Southampton; Dr Emma Pitchforth , Senior Lecturer & Senior Research Fellow in Primary Care, University of Exeter. Prof. Catherine Pope , Professor of Medical Sociology, University of Oxford; Dr. Benjamin Saunders , Lecturer in Applied Health Research, Medical Sociology, University of Keele; Prof. Katrina Turner , Professor of Primary Care Research, University of Bristol; Prof Sue Ziebland Professor of Medical Sociology and Co-Director of the Medical Sociology and Health Experiences Research Group (MS & HERG) in the Nuffield Department of Primary Care Health Sciences, University of Oxford. Colaborators: Dr Ian Maidment , Reader in Clinical Pharmacy at Aston; Lynn Laidlaw is an experienced public contributor involved in UK wide and international research projects; Ali Percy, public co-applicant. Start: 1 June 2022 End: 31 May 2024 Background: Researchers may use different types of data to increase understanding of issues in relation to health and social care. Data may include audio or video recordings of interviews, focus groups (group discussions), and consultations between professionals and patients / service users, as well as written data, such as notes about research. These types of data are referred to as qualitative data. Funders of research increasingly encourage researchers to make their data available to be reused by other research teams. This is in part because qualitative data collection takes a lot of time and costs a great deal of public money. It is also considered ethical to make maximum use of data. Importantly, many people who participate in research tell us it is important to them that their contribution to research is used as much as possible. The project: Despite the increasing need and wish to safely store and share qualitative data, there is no central place to store and provide access to qualitative research data collected about health and social care. We will work with a company that specialises in keeping data secure and has a track record of working with university and health care organisations to develop secure digital storage (a repository) for qualitative data about health and social care. Part of the work will involve taking account of the views of members of the public about consent and use of data as well as data security. This will make sure the guidelines we put in place for people putting data into the repository or using data from the repository are acceptable to both researchers and participants in research. We will publicise the repository to encourage researchers to store their study data and allow access for researchers to answer their research questions. We will also provide a description of what is in the repository on a website so researchers can plan if they could use data from the repository rather than collecting new data. We will charge for use of data so the repository can be self-funding and sustainable in the long term. Expected impact : Increasing access to existing qualitative data from research projects in health and social care will make better use of what we already know about health and social care, saving time and money that would otherwise be spent on collecting new data. It will also satisfy the expectations of funders of research that data should be reused where possible. This project is particularly important as the COVID 19 pandemic has made data collection even more challenging in health and social care sites meaning we need to make the best use of the data we already have.

Justin Strain < Back Thinker, sailor, author, physio Justin's journey so far.. Justin Strain Justin Strain I began my healthcare career a little later than most. At the age of thirty, after a short career in the Royal Navy, I took my first steps into the University of Southampton’s School of Health Professions. I was interested in research from day one. The importance of evidenced-based practice was drummed into us throughout our time at university. From the moment we first wielded a tendon hammer or a stethoscope we were encouraged to ask ourselves those all-important questions: What is the best treatment? Does it work? Why am I doing this? Starting out as a musculoskeletal physiotherapist, I threw myself into clinical practice, desperate to learn every treatment technique and test I could get my hands on. I believed that being a great clinician was about perfecting those tricky manual techniques and learning everything there was to know about anatomy. Or so I thought. Thinking differently Later, as I developed in confidence, I began to think differently about my practice. It seemed to me that what made most difference to my patients was the therapeutic relationship. Understanding the patient’s experience and learning to listen more and communicate better (and sometimes talk less!) started to seem more important than having the biggest toolbox of treatment techniques. Specialising in pain management helped me to appreciate how peoples’ experiences of health-conditions and healthcare were shaped by a complex web of social and personal interactions, making each person’s experience unique to them.The need to understand these unique experiences drew me to qualitative research. I wanted to go further than comparing different interventions. I wanted to understand the stories of the people at the heart of those interventions – our patients. The importance of narrative was not new to me. In my non-clinical life, I write children’s novels – I’ve written two so far and I’m working on a third. In my novel writing, I enjoy the magic of exploring fictional worlds from other peoples’ perspectives. I’ve always found that what brings a novel to life is the personal connection between the reader and the characters. I wanted to apply a similar approach to understanding patients’ stories - listening to, understanding and recording other peoples’ perspectives, and acknowledging the role of the researcher and the reader in interpreting those perspectives. While I was taking my first tentative steps towards qualitative research, the world of healthcare research was changing. The n=1 campaign was gathering momentum, and recognition of qualitative research was increasing. I wanted to get more involved, and found myself looking for the right opportunity. Then, at the beginning of 2020, the world turned upside down with the advent of the COVID 19 pandemic. Along with many other things, the COVID 19 situation has highlighted the need for research – to explore the impact of immediate responses to the crisis, and also to understand how the pandemic will influence longer term changes in how healthcare is delivered. One of those long-term changes is likely to be the proliferation of online healthcare. The plethora of online health interventions now on offer enables people to access consultations and courses that might previously not have been available to them, in a safe, socially distant way. I felt this area was worthy of more exploration, and I wanted to listen to the stories of service users, to understand how these changes had impacted on their experiences. I resolved to start a research project looking at patients’ experiences of online pain management in our own service, but I was struggling to find the time - alongside a busy job in clinical practice, dealing with redeployment and the current challenges of COVID 19, and being dad for our two wonderful children. The NIHR ARC Wessex Clinical Academic Internship has given me that time. It has enabled me to build and apply my skills in research as part of my clinical job, making a difference to how I can support patients within my service. So where am I now? I am in the early stages of my project – a systematic review of qualitative literature about patients’ experiences of online pain management, combined with semi-structured interviews with patients who have completed the online pain management programme within our own service.As well as time, the Clinical Academic Internship has provided a network of similarly minded people, interested in research and qualitative exploration of issues. The excellent events run by NIHR ARC Wessex have introduced me to new research concepts and skills. My supervisors, Dr Euan Sadler and Dr Lindsay Welch , have been extremely supportive and with their help my skills and confidence are growing. I am planning to complete my project in Autumn this year and I am hopeful that this will lead on to a pre-doctoral, and eventually a doctoral fellowship with NIHR ARC Wessex in the future. Dr Euan Sadler is an Associate Clinical Professor of Older People and Frailty within Health Sciences at the University of Southampton. Dr Lindsay Welch is a Lecturer in Adult Nursing and a Researcher in long term conditions. Previous Next

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.

45c5bd14-475f-4afa-ac9a-403f77123c69 CHAMPION: Children whose mothers are involved in the criminal justice system in Dorset & Hampshire: developing health and social care outcome indicators Chief Investigator Professor Julie Parkes Professor in Public Health Head of School of Primary Care, Population Sciences and Medical Education Faculty of Medicine University of Southampton, South Academic Block, Southampton General Hospital, Tremona Road, Dr Emma Plugge Associate Professor in Public Health School of Primary Care, Population Sciences and Medical Education Faculty of Medicine University of Southampton, Co-Investigators Dr Donna Arrondelle , Research Fellow, University of Southampton Dr Naomi Gadian, Public Health Specialist Registrar, University of Southampton Donna Gipson, Director EP:IC Consultants Ltd, West Malling, Kent Dr James Hall , Associate Professor of Educational Psychology, University of Southampton Paula Harriott , EP:IC Professor Kathleen Kendall , Professorial Fellow of Sociology as Applied to Medicine, University of Southampton Dr Sara Morgan , Associate Professor in Public Health, Faculty of Medicine, University of Southampton Professor James Raftery , Faculty of Medicine, University of Southampton, Dr Lucy Wainwright , Director of Research, EP:IC Consultants Ltd, West Malling, Kent Ms Natalie Austin , Public Health Specialist Registrar, University of Southampton Starts: 1st April 2023 Ends: 30th September 2024 Summary In this study, we will identify important features of children’s health and wellbeing that are affected when their mother is sent to prison. For example, it might be their mental wellbeing or their behaviour. If we know what the important features are, then researchers and organisations providing services (such as the NHS) can monitor these for change; this is important to see how the child is but also to see if services are helping him or her. In the past, researchers have not looked in depth at the health and wellbeing of these children. We want to look at all the studies conducted so far to see what areas of their health have been looked at and also to find out areas of their health where the evidence is lacking. We will also speak with adults who were children when their mother was imprisoned to hear their views about what health issues are important and what would have helped them at that time. We will also speak to children who are living with their mother in a prison alternative in the community to find out from them about their health and what has helped them in this particular place. Finally, we will speak with a range of professionals, from doctors to teachers, who work with children whose mother has been imprisoned. We will ask them to tell us about the aspects of these children’s health and wellbeing that they think are important and likely to be affected by the child’s mother going to prison. When we have the information from published studies, from the children themselves and from the professionals, we will bring together a group of people with experience of their mother being imprisoned and also professionals. We will work with them to agree the most important features of children’s health and wellbeing that are affected when their mother is sent to prison. These ‘outcome measures’ are helpful to developing services for these children. People with experience of their mother being imprisoned have helped design the project and will lead on data collection and analysis. They will also be important in spreading the word about the study. This will enable us to reach not just academic audiences and policy makers through publishing in journals or presenting at research conferences, but also people with lived experience and charities that work in this area. Informing a wide range of people will be important in ensuring that the findings from this study are acted on.

e3705a45-1f6d-4b9b-9466-a536d5b062ff Shift Pattern Feasibility https://vimeo.com/823738288 Feasibility of collecting and using nursing shift patterns data in acute, community and mental health wards Principal Investigator: Dr Chiara Dall’Ora Team members: Dr Chiara Dall'Ora (Senior Research Fellow in Nursing Workforce, School of Health Sciences, University Of Southampton), Professor Peter Griffiths (Chair of Health Services Research, School of Health Sciences, University of Southampton), Ms Nicky Sinden (Head of Nursing Workforce at Portsmouth Hospitals NHS Trust), Dr Sarah Williams (Associate Director of Research & Improvement, and Academy Lead at Solent NHS Trust), Ms Catherine Smith (Associate Director Workforce Research and Innovation, Southern Health NHS Foundation Trust), Professor Jane Ball (Deputy Head of School (Research & Enterprise), School of Health Sciences, University of Southampton), Dr David Culliford (Senior Medical Statistician, School of Health Sciences, University of Southampton), Mr Anthony Austin, PPI contributor Start: 1 October 2020 Ended: 31 December 2022 Partners: University of Southampton, Portsmouth Hospitals NHS Trust, Solent NHS Trust, Southern Health NHS Foundation Trust. UNISON, Royal College of Nursing Lay summary Nurses and care assistants form the largest group of NHS staff. Most work in services that provide care across 24 hours of the day. Research indicates that the organisation of nursing shift patterns might affect the productivity of health services. The introduction of long shifts in nursing was offered as a strategy to maintain service levels while eliminating overlaps. However, research has found that long shifts are associated with higher rates of sickness and poorer patient care. So far, there has been little research exploring individual factors influencing shift work experiences among nurses, and research has been largely confined to acute hospitals. What did we learn/find out? Working long shifts (12-h or longer) leads to more burnout for nursing staff Having little choice around shift patterns leads to more nursing burnout Nurses working 12-h shifts reported lower choice around shift patterns than nurses working 8-h shifts When wards in Mental Health and community hospitals operated with high proportions of long shifts, there were higher rates of patient incidents This was particularly the case for self-harm incidents and incidents of patient disruptive behaviour What difference can this new knowledge make? It will help nurse managers and those in charge of creating nursing rotas It will help nurses working in inpatient settings choose their shift patterns It will keep patients safer because they will be cared for by nurses who are less tired Why is this important for patients, health and care providers and policy makers ? Nursing burnout is at an all time high, and we provided evidence that can help alleviate burnout Improving patient safety is of paramount importance for any health organisation, and our findings support changes to work organisation to improve patient safety What we are going to be doing next? We will keep disseminating our findings by publishing further papers We are now co-developing feasible changes to shift patterns with nursing staff and their managers as part of our new project We have applied for further funding to maximise analysis of datasets we have created as part of this study Publications https://human-resources-health.biomedcentral.com/articles/10.1186/s12960-022-00731-2 Shift work characteristics and burnout among nurses: cross-sectional survey | Occupational Medicine | Oxford Academic https://onlinelibrary.wiley.com/doi/10.1155/2023/6626585 https://onlinelibrary.wiley.com/doi/10.1111/jocn.16974

5fde61a4-c4bf-4d47-8ae3-3eed94045497 ADOPTED PROJECT: Evaluating the Operation Encompass Scheme: A Qualitative Scoping Study Principal Investigator: Dr Sara Morgan Project Team: Dr Maddy Greville Harris (Bournemouth University) Start Date: 1st August 2019 End Date: 21st December 2020 Background For young people, experience of domestic violence or abuse (DVA) is associated with an increased likelihood of experiencing mental health problems, poor academic attainment and later criminal or violent behaviour. The importance of early identification and support for children experiencing DVA is therefore paramount. One safeguarding scheme that is implemented in the UK is Operation Encompass (OE). This scheme involves partnership working between police and schools, to ensure that school safeguarding leads are informed of incidents of DVA involving children from their schools by the start of the next school day. Whilst the OE scheme has been implemented nationally, there is no existing published research exploring implementation of the scheme. What we did This qualitative scoping study carried out semi-structured interviews with 13 police workers and 12 school designated safeguarding leads. Thematic analysis explored three main themes: 1) Information sharing: “the beauty of Encompass is that it’s a conversation” , describing, for example, how OE is invaluable, although seen by some as resource-intensive 2) Facilitators and barriers of the OE scheme , such as staff responsiveness, funding, and resources 3) School support and outcomes: “Now they knew about it, they could go on to help” , such as the usefulness of identifying DVA cases, providing family and wellbeing support. While the OE scheme was considered invaluable in identifying and supporting children following OE, further research into the scheme could assist in a better understanding of how to optimise support for children in schools following a notification of an incidence of DVA. What did we find out? We identified three key themes from our interviews with educators and police involved in delivering Operation Encompass (OE). These were 1. Parameters of the scheme: defining DVA; stages to police implementation; extent and scope of information sharing; expanding and tailoring the scheme. 2. Barriers and facilitators: sustainability; attitudes towards the scheme; compliance and engagement; providing useful, timely contact; systemic promotion, and funding and resources. 3. Outcomes of OE and school support making allowances; check-in and monitoring; providing a safe nurture space; family work, and prioritising wellbeing. There was overwhelming support for the OE scheme from police workers and school safeguarding leads, although several potential challenges to implementation were discussed. The parameters of the OE scheme across regions were discussed, with debate around the content of OE notifications, and how best this should be shared. Although making contact with schools was sometimes challenging, schools agreed that timely information sharing via the OE scheme was useful for providing support to children and their families. Schools discussed the types of support they offered following and OE notification, such as checking in with the child and/or family, and providing a nurture space. Several key recommendations were made, such as the potential usefulness of sharing best practice between schools and the importance of promotion and awareness of the OE scheme. What did we do with this new knowledge? • Findings from the evaluation have been cited in a recent impact report from Operation Encompass, which goes out to all areas in England and Wales delivering OE OE-impact-Report-2023.pdf • The findings on the OE scheme have implications on best practice across police, education, social care settings. • The work was presented through the Association for Children and Adolescent Mental Health Supporting children and families experiencing domestic violence: A Devon and Cornwall perspective - Recording - ACAMH • The work was also used to inform a further grant application on children experiencing domestic abuse and led to a funded UKRI ESRC-funded PhD project by Miss Rebecca Harris | University of Southampton What next? Through my work evaluating violence prevention programmes, and how to support those experiencing domestic abuse, including this evaluation of OE, I’m looking to pursue further research work that understands how to prevent the intergenerational cycle of domestic abuse and how to prevent victims being revictimized or becoming perpetrators as adults. This will involve work with the community in non NHS settings, including partnerships with the police, education, social care and the healthcare system.