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Checklist, webinar and resources Project Outputs Buy-in and Engagement Fit with Health and Social Care Systems Alignment with Health and Social Care Priorities Outcomes and Impact Adoption and Spread Checklist, webinar and resources Quick links: The ARC Wessex Implementation Team have developed a process to assess the implementation factors of ARC projects outputs. Our Implementation Checklist assesses how far research teams have considered implementation and enables us to determine the level of input we need to provide to support the implementation process. The checklist comprises six domains representing key elements in the process leading to implementation. Within each domain there are a set of statements addressing different aspects of this process and the conditions required for implementation. In addition, there are several questions which are intended as prompts to help make the assessment. To complete the checklist, think about your project and consider each statement within the domain and its accompanying question(s). Decide if you agree or disagree with the statement by placing a tick in the relevant column. You should also think about the evidence you have to support your response and details of this should be provided in the last column. If you have questions about the checklist email, please send these to arcwessex@soton.ac.uk addressed to the “Implementation Team” Complete the evaluation survey implementation checklist Implementation Checklist The ARC Wessex Implementation Team have developed a process to assess the implementation factors of ARC projects outputs. Our Implementation Checklist assesses how far research teams have considered implementation and enables us to determine the level of input we need to provide to support the implementation process. The checklist comprises six domains representing key elements in the process leading to implementation. Within each domain there are a set of statements addressing different aspects of this process and the conditions required for implementation. In addition, there are several questions which are intended as prompts to help make the assessment. To complete the checklist, think about your project and consider each statement within the domain and its accompanying question(s). Decide if you agree or disagree with the statement by placing a tick in the relevant column. You should also think about the evidence you have to support your response and details of this should be provided in the last column. If you have questions about the checklist email, please send these to arcwessex@soton.ac.uk addressed to the “Implementation Team” Download implementation checklist Learn more about implementation checklist Download implementation checklist Download the poster Introduction to Implementation - Dr David Kryl (video) Virtual workshop recorded in October 2020 (video) Use the Web-based Implementation Toolkit Video gallery Video gallery Implementation resources Bitesize guides to Implementation Bitesize guides to Implementation Play Video Play Video 10:12 Implementation Bitesize session 1- Dr David Kryl Implementation bitesize 1 - An introduction to Implementation by Dr David Kryl (10 minutes) Play Video Play Video 15:29 Implementation presentation Session 2 Dr Michelle Myall Implementation bitesize 2 - Implementation Science and Frameworks by Dr Michelle Myall Play Video Play Video 09:51 Implementation bitesize 3 - Checklist by Cindy Brooks Implementation bitesize 3 - Checklist by Cindy Brooks (10 minutes) Play Video Play Video 13:48 Implementation Bite size 4 Q & A.mp4 The ARC Wessex Implementation team answers your questions Implementation Checklist Play Video Play Video 10:54 Introduction to Implementation - Dr David Kryl Introduction to Implementation - Dr David Kryl (video) Play Video Play Video 01:15:22 Virtual workshop recorded in October 2020 Virtual workshop recorded in October 2020 (video) Summer Series 2021 Summer series 2021 Play Video Play Video 19:54 Summer Series Session 1: Study Outputs, Buy in & Engagement Cindy Brooks and Dr Michelle Myall explain Implementation in a series of summer sessions Live Q & A session Thursday 7th October 12.00pm Play Video Play Video 15:31 Summer Series Session 2: Fit and alignment with health and social care systems & priorities Summer Series Session 2: Fit and alignment with health and social care systems & priorities by Dr Michelle Myall and Cindy Brooks Play Video Play Video 11:12 Summer Series Session 3: Outcomes and Impact and Adoption and Spread Cindy Brooks and Dr Michelle Myall explain Implementation in a series of summer sessions Live Q & A session Thursday 7th October 12.00pm

COMPLETE: INVOLVing pEople with cognitive impaiRment in decisions about their hospital nursing care (INVOLVER): a pilot study Principal Investigator: Professor Jackie Bridges Team members: Professor Jackie Bridges (Professor of Older People's Care, School of Health Sciences, University of Southampton), Dr Jo Hope (Lecturer, School of Health Sciences, University of Southampton), Dr Tula Brannely (University of Bournemouth). Professor Katie Featherstone (Univesrity of West London) Start: 1 January 2020 Ended: 31 December 2022 Partners: University of Southampton, Solent NHS Trust, University of Bournemouth, University of West London Collaborations developed through project: Alex Iles (grant co-applicant/film contributor) and the Treat Me Well Group (Southampton Mencap) (grant development and film contributors) The Grow Project, Southampton (film contributors) Different Strokes (Southampton) (film contributors) Mayes Bahrani (Southern Health NHS Foundation Trust Patient Experience Group) (grant co-applicant) Catherine Mead (Portsmouth Hospitals NHS Trust, grant collaborator) Rosalynn Austin (Portsmouth Hospitals NHS Trust, grant collaborator) Francesca Lambert (University of Southampton) (grant co-applicant/film project co-applicant) Sofy Bazzini (Digital Learning Team, University of Southampton) (film project co-applicant) Pippa Collins (University of Southampton) (film project co-applicant) Anthony and Caroline Scott-Gall (film contributors) Lay summary We want to help nurses look after their patients in hospital. We want to help them find out how each patient likes to do things like getting clean, going to the toilet, eating and drinking. Some people have to go into hospital to get better. Sometimes, when they are in hospital, the nurses don’t ask them enough about the way they like to do things. For example, if they like a bath or a shower. Or if they need help going to the toilet. Or if they would like to walk about. Or what food or drink they like. Not being asked about these things is not helpful. It might mean that people end up getting sicker and staying in hospital longer. Or they may go home needing more help from their family. People with dementia, learning disabilities or stroke may not be asked these questions about what they like. Sometimes the nurses don’t know how to do this well. Sometimes they know how to do it but can’t do it. The reasons they can’t do it are not well understood. We are a group of people who want to make this better. Some of us work at a university finding things out. Some of us are nurses. We want to include people with dementia, learning disabilities or stroke in our group. This will help us think about how to make things better. We think we can help nurses by using ideas that have worked in other places. When people like us have an idea about how something can be made better, we try the idea out and see if it works. Summary of findings: We have been looking for good examples of how hospitals have changed what they do to make sure people with dementia, people with learning disabilities and stroke survivors are included in making care decisions in hospitals. We looked at all the research in this area and found only 11 studies that did this! Many more studies said they were making care ‘person-centred’ but did not look at how they could directly include people in decisions about their care. We are currently looking in detail at these studies to see what works well, what can go wrong and which bits work best. We will also check if the people who use or might the service were also involved in the design of the changes and testing them. We will report back soon! Our set of short films, Good Care For Me Is… were co-created with people with learning disabilities, stroke survivors and somebody living with Alzheimer’s. We won funding for this from the University of Southampton’s Public Engagement with Research unit (PERu) PER Development Funding Call 2020/21. These have been used in teaching nursing students at the University of Southampton and we are exploring where else they might be used to teach healthcare staff at the University and other good places. They will also be used in research to help design changes to services with patients and staff. Dr Jo Hope has submitted two funding bids to follow the care of people with learning disabilities in hospitals, to try to understand why care between wards varies so much. They both passed the first round and we are still waiting for the final outcome for the NIHR grant Dr Jo Hope has been developing ideas on how to involve people with profound learning disabilities in research and has published about this with her PhD team. What did we achieve? Good Care For Me Is… films are part of the pre-registration nursing curriculum at the University of Southampton, supporting future nurses to understand how they can improve care for people living with dementia, people with learning disabilities and stroke survivors We have found new collaborators in the health service, and people with lived experience who are co-applicants on our successful Stage 2 NIHR Research for Patient Benefit grant called: Improving the care people with learning disabilities receive in hospital: an ethnographic study examining the experiences of people with learning disabilities and the organisation and delivery of their care. Our papers on the inclusion of people with profound learning disabilities in research are challenging research orthodoxy on who can and cannot be directly involved in research We have shared findings from our previous research in Nursing Times, which explores what makes it difficult for patients to ask for help in hospital and why this is more difficult for people with dementia Publications doi.org/10.1111/1467-9566.13435 doi.org/10.3390/socsci11040159 https://onlinelibrary.wiley.com/doi/10.1111/jan.15637 doi.org/10.3390/socsci13010037 What's next? We will be publishing our systematic review into interventions to engage people living with dementia, people with learning disabilities and stroke survivors in nursing care decisions in hospital settings We will explore how our films about care experiences among people living with dementia, people with learning disabilities and stroke survivors might enable more healthcare students and workers to develop their understanding of supporting these patient groups Dr Jo Hope is developing a research programme to explore how hospital care can be improved for people with learning disabilities We will explore and share practical strategies of how people with more profound communication and understanding difficulties can be involved in research and care decisions

< Back PPI reflection on experience in attending an academic conference "Prescribing and deprescribing is something we do to patients so their viewpoint does matter." Rajneesh Kaur and Eloise Radcliffe Picture: Kinda Ibrahim, Eloise Radliffe, Nina Fudge, Jalpa and Rajneesh Kaur In September 2024 I attended an International Conference on Deprescribing in France (ICOD2). I'd been looking forward to this event since first coming to know of it about a year before. When registering for the conference it stated that they welcomed all 'researchers, clinicians and teachers in the deprescribing field'. This prompted me to email the organisers to ask if I could attend as a non-healthcare professional. They were very welcoming and reassured me that anyone can attend. I was excited not only to see what was happening at the cutting edge of deprescribing but also because I was going to meet the Southampton team in person for the first time at the conference. We had communicated over Teams before but the conference was a great way to meet each other in person. We recognised each other straight away and were in close company over the two days at the conference. The actual content of the conference reconsolidated a lot of what I had learnt about deprescribing so far. It was great to see leading figures deliver live and to be able to ask questions and have conversations with them. When mingling in the workshops and over lunch, people were interested to gain our perspective — I was attending with a good friend of mine who is also a non-healthcare professional like me, but as she is a solicitor, the healthcare professionals at the conference seemed very interested in the legal angle of deprescribing when speaking to my friend. This legal area does need exploring I feel. The viewpoint of patients and carers seemed like something the healthcare professionals valued, yet I felt it was under-represented in the conference. Prescribing and deprescribing is something we do to patients so their viewpoint does matter. I enjoyed listening to the presentation from David Gardner in particular, who shared a patient's experience, with the patient (George) interacting live on the call. This really brought to life how deprescribing can make a difference. Bringing the patient's perspective forward can bring inspiration and motivation to healthcare professionals to be more comfortable with stepping into the unknown and trying something new. I also appreciated that the conference organisers were trying to be open and ethical about their funding, especially pleased that they were not accepting funding from pharmaceutical companies. This made it seem OK that we didn't have any extravagant lunch arrangements, I'd rather that and keep the soul of the conference alive. Also, my friend and I were humbled and surprised to see that every other person at the conference was a pharmacist. It was almost as if after working with medication so closely, these pharmacists realise the harm as well as the good that medicines can do and therefore have come to the conference to understand and acknowledge the importance and challenges of deprescribing. Although deprescribing should be a part of prescribing, it is practised far less than prescribing. In fact, I would say that the benefits of deprescribing are just now being realised and are not mainstream at all. As a result, it seemed very challenging when I first set out looking for pathways to come off medication safely and only then eventually even came across the term deprescribing. The conference was international and it opened doors to meet people from other countries who were on the same page. I especially remember my encounter with a researcher from Denmark who said something very profound, she explained that it's not the patients that need educating, if we make a safe space where people can be deprescribed from medication — they will come. This researcher had struggles with a loved one who is on medication. This conference was a great platform to network and strengthen beliefs in deprescribing. It was only the second international conference ever held on this topic and I am very much looking forward to ICOD3 Eloise: One of the highlights of attending the International Conference on Deprescribing in Nantes, France, was meeting Rajneesh in-person, our highly valued and very engaged Patient and Public Involvement (PPI) team member. She has been a PPI group member of the ARC Wessex-funded MODIFY study (Medication review and deprescribing intervention for older people living with frailty in primary care) and is now chairing the PPI group for a new ARC Wessex-funded study DOMINO-HF (Deprescribing and medicines optimisation in older people with heart failure). I had previously only met her online and the conference was a great opportunity to talk in-person about the presentations and workshops by international leaders in the field of deprescribing and discuss Rajneesh’s ideas for future projects. The conference was a very welcoming and supportive environment and I would definitely agree with Rajneesh that more patients and caregivers should be represented at the conference, and will hopefully be encouraged to attend and participate in the next one, ICOD3 in 2 years time! Previous Next

Deprescribing and Optimisation of Medicines IN Older people with Heart Failure and Frailty (DOMINO-HFF) Chief Investigator: Dr Eloise Radcliffe, Senior Research Fellow School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton Team: Dr Kinda Ibrahim, Associate Professor, School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton Dr Sara Mckelvie, Clinical lecturer, School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton. Dr Stephen Lim, Principal Clinical Research Fellow, Consultant Geriatrician, Medicine for Older People, University Hospital Southampton, Southampton General Hospital. Dr Chris Young, Consultant Geriatrician, Medicine for Older People, University Hospital Southampton, Southampton General Hospital. Dr Nina Fudge, Lecturer, Centre for Primary Care, Wolfson Institute of Population Health, Queen Mary University of London. Dr James Sheppard, Associate Professor, Nuffield Dept of Primary Care Health Sciences, Medical Sciences Division, University of Oxford. Mrs Clare Howard, Clinical Lead for Medicines Optimisation, Health Innovation Wessex. Prof Simon Fraser, Professor of Public Health, School of Primary Care, Population Sciences and Medical Education,Faculty of Medicine, University of Southampton. Dr Peter Cowburn, Consultant Cardiologist, University Hospital Southampton, Southampton, General Hospital. Ms Rajneesh Kaur, Patient and carer representative . Partners: University Hospital Southampton NHS Foundation Trust, University of Southampton, Health Innovation Wessex, Queen Mary University of London, University of Oxford. Start: 1 October 2024 End: 31 March 2026 Background Heart failure ( HF) is a long-term disease with symptoms including breathlessness, tiredness and leg swelling. HF is more likely to affect older people and is the leading cause for hospital admission in the UK for those aged over 65 years. Most people with HF have other health conditions therefore taking multiple medication is common. Guidelines for doctors to treat HF recommending multiple medications to help improve symptoms and help people live longer, have led to concerns about further increases in numbers of medication for patients. The application of these guideline in older adults has had the unintended problem of more complex medication regimes, and possible impacts on physical ability and quality of life. More generally, taking multiple medication can increase risk of side-effects, hospital admission and death for older people. The research studies used to decide guidelines for doctors to treat HF, may underestimate the risks of taking multiple medicines as they do not include populations most vulnerable to potential harmssr such as older adults and those with frailty. This leads to uncertainty about the long-term benefits and risks of HF medications in the very old and frail populations who are, nonetheless, still treated based on the guidelines. Prescribing should ideally be tailored to each patient’s health condition and their preferences. These factors will change over time, supporting the need for regular medication reviews, and where appropriate, the need for reducing, stopping, or switching drugs in order to improve outcomes. However, this may be challenging due to the lack of research studies, as patients and multiple health care professionals involved in caring for older patients with HF, may experience uncertainty and have differing approaches to the application of the guidelines. Aim To examine research studies on prescribing and deprescribing of HF medication in older people, including those living with frailty. This will inform current guidelines for doctors to treat HF. It will also identify gaps in the research on this vulnerable group commonly prescribed HF medication, but at the greatest risk of experiencing harmslinked with taking multiple medications. Design and methods Two literature searches will be carried out pat, guided by an information specialist librarian,following the established guidelines. Patient, public and community involvement This study has patient and public involvement (PPI) throughout. We will have PPI group of older people and carers living with HF, chaired by our PPI lead who is also a research team member and has contributed to study development. The group will contribute to the interpretation andcommunication of findings on a wider scale. Dissemination Findings will be promoted to the wider research and local clinical community through ARC Wessex networks and our links with Health Innovation Wessex , and in journal publications and conference presentations. We will also promote findings through the links that we will make with local and national charities such as Age UK Southampton, Wessex Heartbeat and the British Heart Foundation.

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.

COMPLETED: 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.

COMPLETED: Predicting Patient Deterioration Risks in COMMunities 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

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.

< Back My journey into research My interest in research came as a bit of a surprise. Clare Phillips - Hepatology Nurse Specialist, MSc Global Health My interest in research came as a bit of a surprise. In 2016, I started an MSc in Global Health part-time at BSMS. I had previously completed the Diploma of Tropical Nursing at London School of Health and Tropical Medicine and was working as a clinical nurse specialist in viral hepatitis at the time. I started the MSc thinking I’d be more interested in the policy side of the course or, where it might take me from a clinical perspective. But, it was working with Prof Gail Davey’s research group, for my MSc dissertation, that was the game changer. Prof Davey’s work in Ethiopia had shed light on the neglected tropical disease, podoconiosis , in quite a remarkable way - improving care for those living with the condition, giving a voice to the seldom heard, influencing national policy, challenging stigmatising attitudes and building research capacity (across disciplines) within Ethiopia. It was hugely inspiring and a clear example of how research had enormous scope to influence change. Having completed my MSc, I began voluntarily joining various research projects that were going on at work – collecting data for some, writing manuscripts for others. This helped me build my CV and confirmed that a career in research was right for me. I moved back to Southampton in summer 2019 and began working for the Alcohol Care Team at University Hospital Southampton. Inadvertently, I stepped into a research-focused team, who wanted to use research to make a difference to our patient group. And it made all the difference. In 2021, with my manger, Anya Farmbrough, and Richard Darch from Adult Safeguarding, I wrote a paper challenging perceptions of self-neglect in patients with alcohol use disorder ( More than a ‘lifestyle’ choice? Does a patient's use of alcohol affect professionals' perceptions of harm and safeguarding responsibilities when it comes to self-neglect? A case study in alcohol-related liver disease | Gastrointestinal Nursing ( magonlinelibrary.com ) ). With support from Anya and our medical lead, Prof Julia Sinclair, I applied for the ARC Wessex Mental Health (Alcohol) Internship in 2022. My internship focused on older adults with alcohol use disorder (AUD), analysing some pre-collected service evaluation data and working on a systematic review of AUD interventions in this cohort. The internship gave me the time (and funds) to focus on developing gaps in my skillset e.g. I took an online statistics course and had the opportunity to work 1:1 with the ARC statistician to refresh my statistics skills. I am not sure how or when I would have been able to do this without the internship. The internship also provided opportunities to present my work, from academic conferences to departmental meetings and PPI groups. This allowed me to get familiar with answering direct questions about my research, and how to deal with the trickier ones! As a result of the ARC Wessex Internship, I had 2 abstracts accepted at national conferences this year ( 1586 OLDER AGE IS AN IMPORTANT PREDICTOR OF NON-REFERRAL TO COMMUNITY ALCOHOL SERVICES FOLLOWING AN INPATIENT EPISODE: FINDINGS FROM | Age and Ageing | Oxford Academic ( oup.com ) , P28 Mortality and cause of death in patients aged 50–59, 12 months after review by an alcohol care team | Gut ( bmj.com ) ). The internship also got me thinking about my next steps and enabled some key conversations to take place. I am certain my future career is a research-focused one and am currently working on my application for Round 11 of the NIHR Doctoral Fellowship programme. I have an important research question that needs answering, and so its full steam ahead! More about Clare Previous Next

A national evaluation of Project Cautioning And Relationship Abuse (‘CARA’) awareness raising workshops for first time offenders of domestic violence and abuse Health Inequalities National Priority Project in conjunction with ARC West, ARC NENC, ARC WM, ARC Y & H Principle Investigator: Dr Sara A Morgan , ARC Wessex, Lecturer in Public Health, School of Primary Care, Population Sciences and Medical Education Faculty of Medicine, University of Southampton Email: s.a.morgan@soton.ac.uk Publication: A national evaluation of Project Cautioning And Relationship Abuse (‘CARA’) awareness raising workshops for first time offenders of domestic violence and abuse: protocol for a concurrent mixed-methods evaluation design - read ARC North East and North Cumbria, Dr Steph Scott, NIHR ARC NENC Senior Research Fellow Email: steph.scott@newcastle.ac.uk ARC West, Dr Jessica Roy, Lecturer in Child and Family Welfare Email: jessica.roy@bristol.ac.uk ARC West Midlands, Professor Kate Jolly, Professor of Public Health & Primary Care Email: c.b.jolly@bham.ac.uk ARC Yorkshire and Humber, Professor Rachel Armitage, Professor of Criminology and Crime Prevention Background: Over one year, nearly 1,200,000 incidents relating to domestic violence and abuse (DVA) in England and Wales were documented by police, with almost half recorded as criminal offences [1]. DVA leads to an adversity package of poor health and social outcomes, such as alcohol misuse and poorer reproductive health. [2] Stakeholder consultation suggests that the criminal justice system (CJS) are struggling to constructively support victims, deter offenders or reduce reoffending, by means of an early intervention. Victims have voiced dissatisfaction and, collectively, professionals feel that they could do better. Furthermore, recent evidence suggests that COVID-19 has had a huge impact on the CJS, creating a backlog of up to 10 years. Hampshire Constabulary were ambitious to test an alternative response via an early intervention that would improve outcomes for victims and their families. Project CARA was developed in 2011 as a conditional caution offered by the police to first time adult offenders of DVA of standard risk. Offenders are required to undertake two mandatory workshops that increase awareness of their abusive behaviour and the safety of partners and children. In contrast to restorative justice, CARA is an awareness raising intervention for offenders, that utilises a trauma informed approach and motivational interviewing techniques across the pair of workshops. In these workshops offenders are further signposted onto services that support improvements in the wider determinants of their offending behaviour, such as to their GP, drug and alcohol services or onto a community perpetrator programme. An initial randomised controlled trial of CARA was undertaken in Southampton custody suite, showing a reduction in the frequency of re-arrest and prevalence of domestic abuse in the intervention arm, one year following randomisation. [3] Aims: Our aim is to evaluate the impact of Project CARA following its wider rollout nationally, including in Hampshire, Avon & Somerset, Dorset, West Midlands, Leicester, West Yorkshire, Cambridgeshire and Norfolk. This will be a mixed methods evaluation study over two years aimed at examining harm to victim and their families whose partners (or former partners) took part in CARA. Methodology: Currently 1500 offenders take part in the CARA intervention annually. Of these, approximately 50% of their victims are also engaged in the process. A longitudinal qualitative study (n=30) using thematic/inductive analysis will be undertaken with offenders and survivors to explore their perceptions and experiences of CARA [4]. This will be conducted at different time points (e.g. before and after CARA). Alongside this, interviews with police staff (n=20) will be conducted in order to explore the barriers and facilitators to implementation, and feasibility of rollout in further areas, and therefore sampling will be stratified to include wider areas that are not delivering CARA. The main quantitative outcomes will relate to reoffending of DVA. Using the IMPACT Toolkit questionnaire during victim contact, the safety of the victim will be assessed prior to completing and up to 3 months following the workshops [5]. This data will be triangulated with DVA reoffending data collected by the police, reporting incidents as suspects or charged. Alongside descriptive analysis of reoffending data nationally, the rates of DVA for eligible offenders will be compared retrospectively using historical data; between counties in the North East, where currently CARA is not being delivered, and at least two other counties including Hampshire and the West Midlands. Using regression adjustment of covariates, such as index multiple deprivation scores, the association of DVA reoffending across the two comparison groups will be examined alongside a time to first event analysis. Co Investigators: Professor Rachel Armitage Professor of Criminology and Crime Prevention School of Human and Health Sciences University of Huddersfield Huddersfield HD1 3DH Email: r.a.armitage@hud.ac.uk Dr Joht Singh Chandan, NIHR Academic Clinical Lecturer in Public Health, Murray Learning Centre University of Birmingham Edgbaston Birmingham B15 2TT Email: j.s.chandan.1@bham.ac.uk Dr David Culliford, Senior Medical Statistician NIHR CLAHRC Data Science Hub School of Health Sciences University of Southampton Southampton General Hospital (Room AA71, MP11) Southampton SO16 6YD Email: djc202@soton.ac.uk Dr Tracey Long, Professor in Health Economics and Outcome Measurements School of Health and Related Research 208, West Court 2 Mappin Street Sheffield S1 4DT Email: t.a.young@sheffield.ac.uk Mrs Fiona Maxwell Public Health Registrar, School of Primary Care, Population Sciences and Medical Education Faculty of Medicine, University of Southampton Email: f.maxwell@soton.ac.uk Dr Ruth McGovern, Lecturer in Public Health Research/NIHR Post Doctorate Fellow Population Health Sciences Institute, Newcastle University Baddiley-Clark Building Richardson Road Newcastle upon Tyne NE2 4AX Email: r.mcgovern@newcastle.ac.uk Dr Will McGovern Senior Lecturer, Social Work, Education and Community Wellbeing M005 Manor House, Coach Lane Campus (West) Northumbria University, Newcastle upon Tyne NE7 7TR Email: william.mcgovern@northumbria.ac.uk Dr Jessica Roy, Lecturer in Child and Family Welfare School for Policy Studies, University of Bristol 8 Priory Road Bristol BS8 1TZ Email: jessica.roy@bristol.ac.uk References [1] Home Office (2019) The economic and social costs of domestic abuse. [2] Golding J.M (1999) Intimate Partner Violence as a Risk Factor for Mental Disorders: A Meta-Analysis. Journal of Family Violence. Vol 14; 99- 132. [3] Strang, H., Sherman, L., Ariel, B. et al. (2017) Reducing the Harm of Intimate Partner Violence: Randomized Controlled Trial of the Hampshire Constabulary CARA Experiment. Camb J Evid Based Polic 1, 160–173. https://doi.org/10.1007/s41887-017-0007-x [4] Braun V, Clarke V (2008) Using thematic analysis in psychology. Qualitative research in psychol-ogy 3 (2):77-101 [5]Jones, C. (2015) Implementing the IMPACT Toolkit (Part II) Accessed online at https://www.work-with-perpetrators.eu/fileadmin/WWP_Network/redakteure/Expert%20Essays/Implementing_Impact_Jones.pdf [6] Hartfiel, N., & Edwards, R.T. (2019). Cost–consequence analysis of public health interventions.

DEM-COMM programme Building Capacity in Dementia Research DEM-COMM is a capacity-building scheme for post-doctoral researchers working in applied dementia research. The scheme launched on October 1st, 2022, with funding from the National Institute for Health and Care Research and the Alzheimer’s Society, and will run until March 31st, 2026. The aim of DEM-COMM is to prepare a future cohort of researchers for the role of Chief Investigator in applied dementia research. This is an important and specialised role that carries with it the expectation that the lives of people living with (or at risk of) dementia will improve because of research. The scheme supports the development of 60 early to mid-career researchers working in one of the 15 Applied Research Collaborations (ARCs) across England. Latest Blog from Ruth - DEM-COMM in Geneva DEM-COMM is led by Professor Ruth Bartlett with ARC Wessex as the host and coordinating centre. We organise and create opportunities for this cohort of researchers to collaborate and develop capacities in applied dementia research. To date, this has included a Winter School (see image above), webinars, a joint networking event with the Three Schools Dementia Programme, facilitating the establishment of 12 Special Interest Groups, and creating an internship scheme to develop even more capacity. In May 2025, we are organising a National Festival of Applied Dementia Research. This will create opportunities for the DEM-COMM cohort to engage with people outside academia, including people living with dementia, carers, and service providers. NHS Dorset Integrated Care System (ICS) Hampshire and Isle of Wight Integrated Care System (ICS) NHS Trusts Dorset County Hospital NHS Foundation Trust Dorset HealthCare University NHS Foundation Trust Hampshire Hospitals NHS Foundation Trust Isle of Wight NHS Trust Portsmouth Hospitals University NHS Trust University Hospitals Dorset NHS Foundation Trust Salisbury NHS Foundation Trust Solent NHS Trust Southern Health NHS Foundation Trust University Hospital Southampton NHS Foundation Trust Universities Bournemouth University University of Portsmouth University of Southampton University of Winchester Research partners Health Innovation Wessex (formerly Wessex Academic Health Sciences Network)

ADOPTED: (SIFT) Sensors in Fatigue Tracking in Parkinson’s. Exploring the relationship between perception of Fatigue and the performance of physical activities in people with Parkinson's with fatigue using wearable sensors Fatigue is one of the three most debilitating symptoms in Parkinson’s. Fatigue is difficult to diagnose, it often goes unrecognised, and is challenging to treat. The SIFT-PD study is exploring how fatigue impacts physical activity in people with and without Parkinson’s over a 3-day period. It asks participants to fill in fatigue diaries and uses wearable sensors to monitor the how people move over a period of three days. The sensors are small and light and worn on a belt. The sensors track activity (the amount, type and quality of movement). This research looks at whether the sensors can reveal how people’s movements change over the course of three days when they are fatigued. Furthermore, information from sensors might help understand what makes people fatigued and allow it to be measured. Knowing more about fatigue will help to recognise its impact and help develop ways of managing it better.