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a2f4485f-e939-4775-b10a-095900320a55 FinCH Implementation study: Falls prevention in care homes led by NIHR ARC East Midlands working with NIHR ARC North East North Cumbria, NIHR ARC West Midlands and NIHR ARC South London. Project: Falls in Care Homes (FinCH Imp2 study) Principle Investigator: Professor Pip Logan Team members: Dr Jane Horne , Dr Fran Allen, Maureen Godfrey , Professor Adam Gordon , Professor John Gladman , Dr Katie Robinson , Dr Paul Leighton , Dr Janet Darby , Michael Fletcher, Professor Gillian Manthorpe , Professor Barbara Hanratty , Professor Dan Lasserson , Professor Elizabeth Orton . Partners: Nottingham University Hospitals (NHS) Trust; Leicestershire County Council (Local Government); University of Newcastle, Kings College London; NHS Bromley CCG; Northumbria-Healthcare NHS Trust. Research sites: East Midlands , North East (North Cumbria), West Midlands and South London. Starts: 1/10/2021 Ends: 30/9/2023 Lay Summary People who live in care homes are at great risk of falling. Falls are common, harmful, costly, and difficult to prevent. The Guide to Action for Falls Prevention Care Homes (GtACH) programme trains and supports care home staff to identify the reasons why residents fall and then guides them to complete actions to reduce falls. In a large multicentre randomised controlled trial called the FinCH trial (1), the GtACH programme was cost-effective and reduced falls by 43%. We now need to research how to deliver the GtACH programme in ‘real life’ outside a research trial. We will work with three regions – East Midlands, South London and the North-East - to develop and research ideas about taking up the GtACH training programme which can be used nationwide. Using an approach to talking to people in care homes called Normalisation Process Theory (NPT) we will consider the work that people do in managing falls to assess whether GtACH becomes routine practice. NPT will help us to think about those things which help and those which hinder the adoption of GtACH. We have three work packages: WP1. Quality Improvement Collaboratives (QIC) will bring care home and healthcare staff together to develop and research ways to implement the GtACH. WP2. The QIC site teams will implement GtACH in 25 care homes per region (60 in total). Data from all homes and residents (about 2000 residents) will tell us the extent to which GtACH has been taken up in the homes. WP3. We will develop ‘toolkits’ of materials for care homes; containing the GtACH, a ‘return on investment’ calculator, the implementation package, and a ‘how to’ guide for establishing Communities of Practice to deliver and sustain the GtACH across regions. This study has been developed in collaboration with care home managers, care home staff, NHS clinicians and our active Patient, Public, Involvement (PPI) group who are co applicants. Going forward we have identified new PPI partners from Ashington and Bromley. We will talk by videoconferencing if needed. The study will be completed by July 2023 and we will disseminate our findings on the ARC-EM website, producing a short trailer video for YouTube, and through articles in journals and MyHomeLife Magazine. We will link our website on the national forums of the National Care Forum, Skills for Care, and Care England, Age UK, and the Alzheimer’s Society, and hold webinars for funders and managers Method Using monthly stakeholder meetings, consensus groups, interviews and literature searching we re-designed the GtACH into a suite of resources that care homes were happy to use and renamed it, on their request, to the Action Falls programme. Using an implementation theory called Normalisation Programme Theory we designed a research study to test how the Action Falls programme worked in 60 real world care homes. Care homes are being recruited across four ARC locations. All care home staff included in the 60 homes are being invited to complete the Action Falls training and complete a questionnaire (called the NoMAD) to assess how ready they are to use the programme. Interviews with care home staff and the trainers are being completed to get a first-hand view of how well the Action Falls is getting embedded into routine care. Care home staff are coming together in supportive collaborations, called Action falls Collaborations (AFC) to share knowledge, with researchers collecting data at these events. Results Ethical approval for the study has been granted by HRA East Midlands and Derby Research Ethics Committee Ref: 22\EM\0035. The study is adopted by the NIHR portfolio and the NIHR Clinical Research Network are helping to deliver the study in all locations, which are listed below in brackets. 36 care homes (60%) have been recruited, 13 in ARC North East (NE), 9 ARC London South (SE), 14 ARC East Midlands (EM). ARC West Midlands (WM) will start recruitment soon. In the ARC EM location we have four separate NHS Trusts/ Local authority areas involved. 7 NHS/ Local Authority/HEI Falls Leads have been trained in ARC’s NE, LS and EM and have begun training of the care home staff across the locations. One AFC has taken place in NE with the East Midlands AFC and South London due to take place later this month. The NoMAD questionnaires have been delivered to care homes. No interviews have yet been completed as these are due to start in November. In addition to the four locations the team have interacted with 83 individual care homes and 47 stakeholder groups sending them the Action Falls resources and talking over how they might be used, but no training has been offered. The images below show the spread of these enquiries Conclusion The study is progressing well, and care homes are very keen to take part and recruitment for the study is currently at 60%. The sites are set up and staff are in posts. We are approximately three months behind target on the activities due to care homes being reluctant to engage early in 2022 due to COVID. We consider that we may need a no cost 6-month extension to complete all the activities and to also get the Action Falls programme ready for wider spread. All our study meetings are well attended, and we have good participation from our PPI members with information being communicated from out Study Steering Group to the Stakeholders and vice versa sharing knowledge and experience. The study has gathered a lot of interest from outside of the study areas, from care homes and a range of other stakeholders. The research team have been sending out study materials and meeting with these groups over MS Teams meetings sharing resources and information about the study.A PhD student will be working with the care homes outside of our study locations from October 2022.

d6d7fb08-5eb7-4cab-afcf-359d64b8fe12 ADOPTED PROJECT: Young people’s barriers to mental health services Lead: Dr. Corine Driessens Co-Investigator: Professor Peter W F Smith Kim Markham Jones & Fiona Lacey – YoungMinds Nicole Davenport, Mahdi Hassan, Shahrbano Iqbal, Friday Skelton – young researchers recruited by and in employ of YoungMinds Starting date: October 2022 Ended: July 2025 Published in journal of psychiatric research online: Use or no use? Young People's engagement with mental health services https://doi.org/10.1016/j.jpsychires.2026.01.034 Many young people in the UK experience anxiety or depression, but most can’t get mental health support when they need it. From the very beginning of this project, young people, both as young researchers and as participants in four co-production workshops, played a central role in shaping our questions, interpreting the findings, and explaining what the results mean in real life. Their insight guided every stage of the work. This study looked at what affects whether young people use mental health services and what happens to those who don’t. The biggest factor in getting help was whether health care professionals recognized the young person’s distress was a mental health disorder. Other things like, severity of symptoms, being a female, having fewer supportive people around, or having unemployed parents played a smaller role. Young people who didn’t use services were less likely to be female, come from single-parent families, have caring responsibilities, or have been bullied. They were also more likely to have good relationships with their parents. Those who did use services had poorer outcomes later in adulthood, suggesting they faced greater difficulties overall. Because specialist mental health services are overstretched, responsibility has shifted to GPs and teachers, who often feel under-resourced and not fully trained to meet these needs. The GPs we spoke to faced strict referral rules, long waiting lists, short appointments, and limited mental health training. The teachers we spoke to also felt pressure to support students without the resources or guidance they need. After hearing these findings, a group of young people from the “missing middle” (those struggling but not qualifying for specialist care) recommended: Training all school and college staff in mental health. Better support for apprentices at work. Peer support groups in schools, colleges, and universities. Safe spaces and housing support for LGBTQIA+ students. More help for young carers and fairer benefits. Better training for all health workers to support diverse communities. Looser referral rules so young people don’t have to be “ill enough” to get help. Youth hubs offering safe spaces, activities, and mental health support. Overall, the findings show the need for more inclusive, preventative, and joined-up mental health support for young people. Reflections on Young People involvement with shaping analysis framework for mental health .docx Download DOCX • 2.37MB What did we find out? Presented the findings at national and international conferences (e.g. MQ/DATAMIND, ADRUK, NIHR Statistics Group, EPA Epidemiology & Social Statistics, International Congress of the European Society for Child and Adolescent Psychiatry) Presented the findings at ARC Wessex webinar Presented findings on ARC Wessex website Where next? The young people who took part in our workshops were very clear about one thing: we need to start much earlier. They told us that helping children learn emotional skills, like understanding their feelings, managing stress, and asking for help, before stigma takes hold could make a big difference in preventing mental health problems later on. Taking this guidance seriously, our team has now grown to include experts who know how to design effective mental health programmes for primary schools, as well as researchers who can identify exactly which elements such a programme should include. Our next step is to develop a primary school–based intervention shaped by what young people told us matters most. Because this type of work sits outside ARC Wessex’s remit, we are now seeking external funding to take the project forward and bring this early-intervention programme to life. https://video.wixstatic.com/video/6fe132_c8aa61002b864940a8aac2b8d7754c07/480p/mp4/file.mp4 https://video.wixstatic.com/video/6fe132_ee6a84e1cd6a4745a6de0f05e2034688/480p/mp4/file.mp4 https://video.wixstatic.com/video/6fe132_fc53aac3539f4f839ea71adcfb34b517/720p/mp4/file.mp4 Olly Parker, Head of External Affairs and Research at YoungMinds , said: “This research from YoungMinds and the University of Southampton shines a vital light on the record numbers of young people needing mental health support. Growing up today is incredibly tough. Many young people are experiencing multiple pressures which impact their mental health, including poverty, inequality, intense academic pressure and the online world, so it’s no wonder so many are struggling. One of the clearest recommendations from the young people involved is the urgent need for early support hubs in every community. We know many young people face long waits for mental health support and become more unwell while waiting, which can lead to needing more urgent care. We need major reforms to address the root causes of poor mental health and for the Government to focus on reducing waiting lists so young people can get the support they need. The recent 10 Year Health Plan showed promising commitments with Young Futures Hubs and Mental Health Support Teams. These initiatives are vital to reducing pressures on the system, improving support and reducing waiting times - their rollout must be a political priority. But more is needed to tackle the scale of need - we need radical solutions that will address the reasons why so many young people are struggling in the first place.” Corine Driessens, one of the researchers based in Southampton, said: “It has been a truly wonderful and positive experience working with these groups of young people. Their innovative and fresh ideas across a wide range of ways to help others get the mental health support they need have been inspiring.”

894e3c82-d20e-4fbc-a56a-7d96277ba61e PARTNERS Project: Development and implementation of a digital tool for multisectoral support and management of long-term condition PARTNERS Project: Development and implementation of a digital tool for multisectoralsupport and management of long-term condition Principal Investigator: Professor Mari-Carmen Portillo Co Applicants : Line Bragstad, Dr Dorit Kunkel, Dr Kat Bradbury, Dr Lindsay Welch, Hayden Kirk, Dr Caroline Barker, Sandra Bartolomeu Pires, Christopher Edwards, Lindsay Cherry, Francesca White, Caroline Aylott, Cathal Doyle. Partners: University of Southampton, University of Oslo, Hampshire and Isle of Wight NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, Hampshire and Isle of Wight ICS, Versus Arthritis, and Parkinson’s UK. Lay Summary Background to the research : Self-management is an approach to help people with long term conditions manage their health daily. Existing NHS self-management tools focus on healthcare (medication management, appointments) and fail to capture aspects of how people live with and adjust to long-term conditions. This includes social support (family/friends) and other resources and networks available like the voluntary sector, industry and community groups.We have created an intervention (an action to improve a situation or prevent it getting worse) to support self-management for people with Parkinson’s Disease and their family/carers. This intervention recognises the role of social support, voluntary sector, industry, and community groups in adjusting to living with a condition. Our next step is toadapt this intervention to the needs of people living with other conditions like Arthritis and for those living with more than one condition and create a digital tool. Aim of the research : To develop, implement and evaluate a digital tool that supports the management of people with Parkinson’s Disease and/or Arthritis. The tool will support professionals and other organisations to connect, share resources and optimise communication and referrals, leading to more personalised and cost-effective use of resources (beyond healthcare) in the community. Design and methods: The research will take place in community settings in Wessex. We will prioritise disadvantaged groups (those less comfortable using technology and less able toaccess available resources and support). We will : 1. Work with our patient and public involvement (PPI) representatives, relevant voluntary organisations, health and social care providers, and key people involved in policy making and NHS strategy. They will have a voice ineach decision to ensure our tool is relevant and acceptable to those using it. 2. Host discussion groups with people with Parkinson’s Disease and/or Arthritis and theirfamily/carers to understand the positive and negative aspects of existing digital tools, from a patient perspective. 3. Design our self-management tool. 4. Test the tool through two primary care surgeries (GP) and voluntary organisations (Parkinson’s UK and Versus Arthritis).Testing will help understand how the tool is used and what helps or hinders its success. Deliverables : The research will generate: a digital tool to support more effective self-management of Parkinson’s Disease and/or Arthritis, recommendations for policy development, evidence for how to improve NHS services. Public Patient Involvement: We willwork with people with Parkinson’s Disease and/or Arthritis and their families/carers. We will work together as equal partners to define their level of involvement, roles, methods to input and training needs. We will also explore what works best or what we should do differently intheir involvement. Dissemination : We will share our learning across the different groups involved. This will include presentations, policy briefings, newsletters, and public events. What did we find out? We found that people with Parkinson’s and/or arthritis, their carers and professionals involved in their care wanted a digital app that was: • Simple • Easy to navigate • Hybrid – in person contact also signposted Included: • Community resources from voluntary/charity sector • Free or inexpensive resources • Links to peers/buddy for support What next? PARTNERS 2 has evolved, as a continuation project. This allowed time for: A suitable digital company to be found with previous experience of working with people with health condition Full briefing of the digital company about what was required of the digital web app. Development of a 'Life Boost' app Trade marking 'Life Boost' Real-world evaluation of the app with Social Prescribers in Hampshire Linking 'Life Boost' to MyMedical Record (University Hospital Southampton NHS Foundation Trust) The PARTNERS 2 project will now: Ga in full exposure by having it adopted onto the My Medical Record platform at the University Hospital Southampton NHS Foundation Trust Be used in the real-world and a business/company/organisation will be sought to adopt the app for further development and management

Research Fellow < Back Stephanie Hughes Research Fellow Ageing and Dementia Steph Hughes is a Research Fellow in the ARC Wessex Mental Health Hub at The University of Southampton conducting research into alcohol use disorder in older adults. Steph has a PhD from The University of Southampton where she explored the impact of significant others on men undergoing active surveillance for prostate cancer. Steph has expertise in qualitative research, self-management of illness and intervention development. Past projects span topics such as irritable bowel syndrome, chronic pain, weight management and primary care communication. Previous Next

65894af6-1d61-4f27-8b10-ff3b90451d8b Safer Nursing Care Tool and nurse staffing requirements What did we learn We found that for some wards using the Safer Nursing Care Tool (SNCT) gives a good estimate of the number of nursing staff needed. However, for other wards, relying on the estimate provided by this tool without further thought could lead to unsafe staffing levels for different reasons. For example, the current guidance recommends setting staffing levels to meet the average requirement, but following this logic, 18 wards in the three Trusts would often have been short-staffed. Also, a quarter of wards needed a sample of over 182 days to estimate the number of staff needed precisely, when the current recommendation is 20 days. Nursing workforce leaders at the three Trusts suggested characteristics of wards where the tool performed least well, for instance, high patient throughput and differences in workload between mornings and evenings. What difference can this new knowledge make? This project and the previous related project (NIHR-funded study https://doi.org/10.3310/hsdr08160 ) led to a direct collaboration with NHS England and NHS Improvement and an invitation to work with them to further develop and update the guidance on using the Safer Nursing Care Tool. The team have spoken about the research findings and implications at a series of NHS Improvement safe staffing fellows training events. They have co-developed a set of resources to help nurses plan staffing. Impact has been achieved through this research shaping revised guidelines published by NHS England and NHS Improvement on using the SNCT in combination with professional judgement to determine nurse staffing requirements. We were invited to help facilitate workshops to co-develop a template for nurses to record their professional judgements. We are also in early-stage discussions with hospital managers in Greece about how the professional judgement framework might be relevant there, as well as discussions about how to achieve wider reach through the World Health Organization website. Why is this important? The professional judgement framework we developed as a result of these projects will benefit nurses, who use this tool nationally, by giving them concrete guidance on issues to consider when deciding staffing levels. It will benefit patients admitted to inpatient wards, through better matching of staffing levels to demand. Having too few nursing staff is related to adverse effects for patients (more deaths, more falls, longer stays in hospital), staff (turnover, sickness) and organisations (higher costs from temporary staff to fill gaps). Diagram 1 We presented the list of wards which were flagged as having overall poor fit to three nursing workforce leaders Some of the common factors they suggested as potential reasons for poor fit are shown here above. They highlighted wards with large morning-evening differences in staffing requirements (based on acuity-dependency ratings) may be among those where the tool fits least well. For wards that are particularly small or large, it is possible that the number generated by the SNCT is less likely to be sufficient to maintain minimum registered nurse levels when rostering staff to shifts. They highlighted some ward characteristics that mean the SNCT multipliers, as they are applied, may underestimate the true workload. These were high patient turnover, older patient population, cancer infusion/device activity. a high proportion of patients requiring one-to-one care AKA enhanced care/specialling. The factors suggested are on the whole congruent with published evidence What next? Our next step is conducting research predicting demand for nursing staff which we plan will also lead to tools and resources to guide decision-making around staffing. Research team: • Professor Peter Griffiths, Chair of Health Services, University of Southampton • Rosemary Chable, Deputy Director of Nursing, Education & Workforce, University Hospital Southampton NHS Foundation Trust • Nicky Sinden, Head of Nursing Workforce, Portsmouth Hospitals NHS Trust • Tracy Moran, Lead Nurse for Nursing Workforce, Education & Practice, Poole Hospital NHS Trust Project partners: • University of Southampton • University Hospital Southampton NHS Foundation Trust • Portsmouth Hospitals NHS Trust • Poole Hospital NHS Trust More information Evi dence Brief Publication 24_11_Professional_Judgement_Staffing_Eprints[16] .pdf Download PDF • 186KB Publications: Saville, Christina and Griffiths, Peter (2021) Ward staffing guided by a patient classification system: A multi-criteria analysis of “fit” in three acute hospitals. Journal of Nursing Management, 29 (7), 2260-2269. ( doi:10.1111/jonm.13341 ). Saville C, Griffiths P, Casey A, Chable R, Chapman H, Radford M, and Watts N (2023) Professional Judgement Framework, doi: 10.5258/SOTON/P1102 University of Southampton ( https://doi.org/10.5258/SOTON/P1102 ) Saville, Christina and Griffiths, Peter , Ejebu, Ourega-Zoé and Fogg, Carole (eds.) (2023) Introducing the Professional Judgement Framework to guide nurse staffing decisions (Evidence Brief, 24) 2pp. http://eprints.soton.ac.uk/id/eprint/484412 Saville, Christina and Griffiths, Peter , Ejebu, Ourega-Zoé and Fogg, Carole (eds.) (2024) Nurse staffing decisions: the Professional Judgement Framework. Nursing Times, 120 (7). https://www.nursingtimes.net/c...4-06-2024/ The Safer Nursing Care Tool as a guide to nurse staffing requirements on hospital wards: observational and modelling study ( nihr.ac.uk ) Video: Computer simulation what and why? https://sho.co/1E34T The importance of professional judgement in nurse staffing decisions https://southampton.cloud.panopto.eu/Panopto/Pages/Viewer.aspx?id=87fcb9bb-e9dc-4b43-8377-acb700e3bec2 Here is the orginal research outline Identifying wards for which the Safer Nursing Care Tool is appropriate for assessing nurse staffing requirements Principal Investigator: Dr Christina Saville Team members: Dr Christina Saville (Research Fellow, University of Southampton) Professor Peter Griffiths (Chair of Health Services Research, School of Health Sciences, University of Southampton), Rosemary Chable RN (Deputy Director of Nursing, Education & Workforce, University Hospital Southampton NHS Foundation Trust) Ms Nicky Sinden (Head of Nursing Workforce at Portsmouth Hospitals NHS Trust), Tracy Moran (Lead Nurse for Nursing Workforce, Education & Practice, Poole Hospital NHS Foundation Trust) Start: 1 December 2019 End: 1 August 2020 Partners: University of Southampton, Portsmouth Hospitals NHS Trust, Poole Hospital NHS Foundation Trust Lay summary It is important to have enough qualified (registered) nurses looking after patients staying on hospital wards, because having too few is associated with worse patient care and more patient deaths. On the other hand, there are extreme shortages of nurses, so having “too many” on a ward could be considered a waste. The Safer Nursing Care Tool is used in many hospital wards in England to work out the number of nursing staff (including nursing assistants) needed. However, a recent study showed that it is more suitable on some wards than on others. For example, we found that factors not accounted for in the tool, e.g. whether a ward is surgical or medical, and the proportion of single rooms, also affected professional judgement of whether staffing was adequate. Aim This study aims to understand which ward characteristics mean that the Safer Nursing Care Tool gives a good estimate of the nursing staff required, and which ward characteristics mean that the number might need to be adjusted or further considered by taking into account the expertise of ward leaders. It also aims, if possible, to provide some general rules or an add-on tool to help nursing managers with setting staffing levels. Methods We will analyse the data that were collected for a previous study in a different way. This time we will focus on differences between wards rather than hospitals. We will use analytical techniques for finding patterns in data to identify similar wards. In our team we have experienced leaders in nursing who will provide expert professional insights into ward characteristics. Patient, public and community involvement and sharing results We will involve nursing managers in the study because they are the potential users of any rules or tools we develop. We plan to develop a resource (rules or a tool) for nursing ward managers and to run a workshop to test use of this resource. We plan to write one academic paper about what we find out. We also can share the plans for this with lay members from the PPI group as appropriate. We are developing a smaller user group across Workforce and Frailty and Older People teams.

be5aaf78-5349-4834-a57a-fcddffbfb962 GOODNIGHT Covid-19 to care-home-based vulnerable individuals Novel corona virus (COVID-19) is a virus that has spread quickly around the world. Elderly people with other health problems have a high death rate from the infection. There are no treatments for COVID-19 so prevention of infection is very important. COVID-19 is thought to infect people via the nose and mouth. Current best practise to prevent infection focuses on good hand hygiene, the wearing of masks and by limiting social contact. However, elderly people in care homes have to come into contact with staff members who are looking after them. Hypertonic saline nasal irrigation and gargling (HSNIG) has been shown to reduce the viral load of coronaviruses and has potential to reduce Covid-19 transmission in a community setting. The objective of this trial is to assess the feasibility and acceptability of care home staff adopting this technique. This research has now been submitted for publication. If you would like to know more about this study please contact Dr Ryan Buchanan Co-Chief investigators Dr Thomas Daniels, Consultant Respiratory Physician, Honorary Senior Clinical Lecturer, University of Southampton Dr Ryan Buchanan, Academic Clinical Lecturer, Primary Care, Population Science and Medical Education, University of Southampton Partners: University Hospital Southampton NHS Foundation Trust, Southampton CTU & NIHR ARC Wessex Co-applicants Professor Julie Parkes, Professor of Public Health, University of Southampton Professor Helen Roberts, Professor of Medicine for Older People, University of Southampton Emeritus Professor Jeremy Wyatt – University of Southampton Dr Beth Stuart – Medical Statistician, Southampton Clinical Trials Unit Dr Kinda Ibrahim - Senior Research Fellow, Faculty of Medicine, University Hospital Southampton NHS Foundation Trust Dr Andrew Cook – Public Health Consultant, Fellow of Health Technology Assessment, University of Southampton See the training video for Care Home staff: https://www.youtube.com/watch?v=__-QSLlGWps Publications http://dx.doi.org/10.14283/jnhrs.2021.3

ff477b29-43df-41e3-8562-aeeb2cfcbef7 ADOPTED: Investigating Quality of Care for People with Dementia Undergoing Cancer Treatment in Ambulatory Care (ImPaCT) Principal Investigator: Dr Naomi Farrington Team members: Dr Naomi Farrington (Advanced Nurse Practitioner and NIHR Clinical Lecturer, University Hospital Southampton and University of Southampton), Professor Jackie Bridges (Professor of Older People’s Care, School of Health Sciences, University of Southampton), Professor Alison Richardson (Clinical Professor of Cancer Nursing and End of Life Care, University of Southampton and University Hospital Southampton). Start: 01 January 2019 End: 31 May 2022 Project partners: University Hospital Southampton NHS Foundation Trust, University of Southampton. S tudy is funded as part of a HEE/NIHR Clinical Lectureship Lay summary: There is not much information about people with dementia having cancer treatment. This study aims to understand how high quality care can be provided for people with dementia undergoing outpatient cancer treatment (radiotherapy, chemotherapy or other anti-cancer treatment). The study uses a research method called ethnography, which is where a researcher conducts ‘fieldwork’ to study a group of people to better understand that group. It will look at: The environment (surroundings and conditions) of the outpatient clinics and treatment areas; How people in the outpatient clinics and treatment areas behave and interact with each other; How treatment and support is organized in the outpatient clinic and treatment areas. Fieldwork will take place in the outpatient departments of University Hospital Southampton NHS Foundation Trust. It will include observations, interviews and review of patient notes. The people who will be invited to take part in the study are: People with dementia having cancer treatment; Friends or family supporting people with dementia having cancer treatment; Staff involved in the care of people with dementia having cancer treatment (doctors, nurses, support workers, administrative staff, and others). All those who take part in the study will be asked to give consent. The study includes: Observation . this will be carried out in cancer outpatient clinics and treatment areas. This will look at the environment (surroundings and conditions); the everyday interactions that happen between patients, carers and staff; and way in which care and support take place. Observation will take place in the general clinic areas as well as during doctor appointments and when treatment is being given. The researcher will take detailed notes. Interviews . these will be carried out with patients, carers and staff. These will focus on how people in the study speak and act to understand more about how they think and feel. Interviews will be digitally recorded, and a written transcript will be made. Patient notes . Researchers will look at patient notes to add to the information from observation and interviews. They will look at the notes to find out about diagnosis, treatment and support offered to patients. These 3 methods of data collection will help the researchers put together a detailed picture of the outpatient setting including how people act ( behaviour ), the surroundings and conditions ( environment ), and the way treatment and support is organised ( processes ). This will reveal ways in which healthcare organisations might best provide cancer treatment for people with dementia that is person-centred (focused on the needs of the person themselves) and of a high quality. What did we learn? The cultural environment of the outpatient care setting reflects and supports the standardized processing of people for cancer treatment. Dementia introduces a wider set of care requirements not catered for by a standardized treatment model. The needs of patients with dementia could be addressed most effectively when individualized care, was offered. This was possible when services were responsive to patient need. What difference did this new knowledge make? Outpatient cancer services can ensure responsiveness by: having an established way of eliciting needs, preferences and expectations a belief that a person's needs and expectations are legitimate, and that effort should be made to address them ability to accommodate these needs and expectations. Why is this important for patients, health and care providers, and policy makers? Managers of outpatient cancer care services have a better understanding of how to design and organize settings so that the needs of people with dementia can be addressed. Patients with dementia and their families will be more likely to receive personalized care that meets their needs. Policy makers will be more aware of the need to incorporate principles of personalized care into policies guiding the care and treatment of people with multiple health conditions. What have we done? This work has been part of building momentum to increase the profile of how people with cancer and dementia receive care and treatment. A national symposium was carried out with clinicians and academics in 2022 showcasing work addressing cancer and dementia. Dr Naomi Farrington is presenting this work as part of a session on ‘Person-Centred Care’ at the European Oncology Nursing Society in Madrid, October 2023. 3 papers have been published on this study: Understanding the cultural environment of the outpatient care setting for patients with dementia receiving cancer treatment: a qualitative study. https://pubmed.ncbi.nlm.nih.gov/36382351/ How can I improve cancer services for people with dementia? https://journals.rcni.com/cancer-nursing-practice/evidence-and-practice/how-can-i-improve-cancer-services-for-people-with-dementia-cnp.21.5.22.s10/full 'A rea l fine balancing act’: A secondary qualitative analysis of power imbalance in comorbid cancer and dementia in an outpatient treatment setting. https://pubmed.ncbi.nlm.nih.gov/36929372/ C LEAR steps for a responsive outpatient cancer service • C larify needs, expectations, preferences and goals • L egitimise these as valid • E nable these to be met by implementing strategies • A udit to ensure this is working for patients caregivers and health service • R ecord for the future https://vimeo.com/688041079

cd5ab336-348b-44b5-a285-82d9866dca9c Adopted Project: ACCESS D: Advancing Community Collaboration and Engagement Strategies in Dementia Collaborators: University of Southampton, University Hospital Southampton NHS Foundation Trust, South Central Ambulance Service (SCAS), University of Sheffield Project team: Patricia Fuller, Andy Claxton, Helen Pocock, Nicola Claxton, Amanda Wollam, Daniel Blackburn, George Devitt, Sarah Fearn, Chris Kipps. Start Date: 14th July 2025 End Date: 13th July 2026 Project Summary Many people are interested in taking part in dementia research but do not know how to get involved, are unsure about what participation would involve, or do not feel that research is for people like them. As a result, studies often struggle to recruit enough participants, and those who do take part may not reflect the wider population. ACCESS D developed and tested a community-based model to make dementia research more visible, accessible, and easier to take part in. Instead of expecting people to come into clinical or university settings, ACCESS D brought research opportunities into familiar community venues and provided real-time support from South Central Ambulance Service (SCAS) research paramedics and nurses. The model was shaped through co-production workshops with public contributors and community stakeholders, which helped define the format, language, and support needed to make research feel approachable and relevant. Early findings show that 71% of participants had not previously heard about research, and 91% reported a positive experience of taking part. Many also said they would be interested in hearing about future dementia research opportunities. These findings suggest that there is substantial hidden interest in dementia research, but that access, visibility, and support are key. ACCESS D shows that recruitment is better understood as a pathway from awareness to participation, rather than a single step. What have we done with our new knowledge? • The findings from ACCESS D are already being used to inform practice, shape discussions with national research infrastructure, and support wider dissemination and future adoption. • First, they provide a practical basis for designing more inclusive recruitment pathways. ACCESS D demonstrates that community-based, supported approaches can reach people who are not engaged through traditional routes, helping research feel more visible, understandable, and relevant. This is particularly important for groups who are currently under-represented in dementia research. • Second, the work is informing discussions with the NIHR Research Delivery Network about alternative approaches to recruitment for NIHR portfolio studies. ACCESS D highlights that recruitment efficiency is not only about identifying eligible participants, but also about creating the conditions in which participation feels possible. This has implications for how recruitment pathways are designed, particularly where studies struggle to recruit to time and target. • Third, the findings are supporting the development of community-based approaches to research delivery that extend beyond conventional clinical settings. This includes exploring how trusted, community-facing services, such as ambulance teams and other outreach services, could help widen access to research. • Fourth, ACCESS D is contributing to the development of practical tools to support wider adoption. This includes co-produced visual materials to help future participants understand research, and a toolkit to help research teams design more inclusive and supported approaches to recruitment. • Finally, the work is being disseminated through academic and practice-focused channels. The study protocol has been published as a preprint and submitted for peer review, helping to make the model visible to wider research and delivery audiences. What next? • ACCESS D has demonstrated early feasibility and is now moving towards wider implementation and further testing. • The next phase will focus on delivering the model across a broader range of teams, settings, and communities, and on understanding its impact on progression into dementia research opportunities. A key question is whether this approach can improve recruitment to time and target in NIHR portfolio studies by reaching people earlier, reducing uncertainty, and reducing avoidable drop-out. • Alongside this, ACCESS D will produce co-produced visual resources, a practical toolkit, and a training approach to support wider adoption. This will help move the work from a single feasibility study towards a transferable model that can be used and adapted by other teams. • ACCESS D has been designed in a way that supports future scalability and transferability. It uses existing trusted workforce roles, adaptable community settings, and low-burden research activities, allowing it to be implemented in different contexts while retaining its core principles. This gives it potential relevance beyond dementia, particularly in areas where research participation is limited by access barriers, uncertainty, or lack of visible routes into research. • Longer term, ACCESS D has the potential to contribute to a more inclusive and efficient model of community-based research delivery, aligned with NIHR priorities around inclusion, decentralised research, and improved recruitment performance. • This next stage is being supported through a staged funding approach, including University of Southampton Public Engagement with Research (PERU) funding for co-produced outputs, and Dementia Translational Research Collaboration (D-TRC) funding for further analysis and development. Earlier pilot delivery was supported through strategic SCRRDN funding.

6e7ee8b2-1a6e-457b-9b3c-d7c31dc9079f ADOPTED: CEDA ‘Making the invisible visible’: identifying and responding to unpaid carers who experience domestic abuse from end-of-life care recipients Chief Investigators: Dr Michelle Myall , School of Health Sciences, University of Southampton and Dr Sandi Dheensa, University of Bristol. Team: Dr Susi Lund, Dr Sophia Taylor and Dr Becky Foster , School of Health Sciences, University of Southampton. Professor Siobhan O'Dwyer, University of Birmingham. Ms Katy Styles, We Care Campaign. Ms Marion Goodchild, Public and Patient Contributor. Summary Globally, home is most people’s preferred place of death. This relies on physical, emotional and practical support from unpaid carers e.g., family members, friends, or neighbours for people at the end-of-life (EOL) who are recognised as the most important factor in delivering at-home end-of-life care (EOLC). In England approximately 500,000 people provide unpaid EOLC. Half of unpaid carers provide up to 19 hours of care per week , increasing to an average of 70 hours at EOL. Unpaid carers make crucial contributions to EOLC, off-setting health service costs and enabling patient choice. Many carers do not identify as ‘carers’ and the caring role is often unplanned. Whether they choose the role or not, the demands of EOLC often exceed carers’ capacity to cope and are associated with poor physical and mental health, social isolation and financial insecurity. For some carers, suicide and homicide-suicide can seem like the only way out. There is clear evidence that EOL carers experience worse outcomes compared with those who care for someone who is not at EOL, and these outcomes increase in line with number of care hours provided and severity of the person’s illness . These negative consequences are compounded for EOL carers who are female, older, disabled, migrants, black, or minority ethnic. While the general toll of caring is well documented, little attention has been paid to the impact of caring or a person at EOL who is, or has previously been, abusive. Research that understands carers survivors’ experiences, and informs policy and practice for improved support is imperative. This research is a 24-month qualitative study comprising three linked phases. A qualitative approach will enable a sensitive and nuanced exploration of complex experiences and the relational aspects of domestic abuse (DA) in EOL caring relationships . We will work in partnership with people with lived experience, HSCPs, specialist DA organisations and key public service representatives through a Community of Practice (CoP) to co-produce knowledge and guidance to help HSCPs identify and respond to carer-survivors and generate recommendations to inform policy and practice. This study will generate important new insights into carer-survivor experiences. This is essential to ensure improved outcomes and to address gaps in support for carer-survivors during the EOL period and through to bereavement. The study will also produce resources for (Health and Social Care Professionals)HSCPs to identify and respond to DA, with the goal of improving carer experience, wellbeing, and safety. The study is part of a programme of research focused on domestic abuse where it co-exists with long-term/life-limiting illness and end of life. In 2024, we co-developed the DALLI toolkit, a resource for health and social care professionals working with people at end-of-life who are at risk of domestic abuse. The DALLI toolkit is hosted by Marie Curie and has been adopted in hospices, local authorities, integrated care boards and domestic abuse services in the UK and has attracted international interest. If you would like to find out more please click here: COMPLETED: Domestic Abuse and Life-Limiting Illness: identifying and supporting adults at risk (DALLI Study)

33e12535-88ee-441a-8d7b-06392d99b190 ADOPTED PROJECT: Understanding risk stratification of patients with chronic kidney disease (CKD) in primary care ADOPTED PROJECT: Understanding risk stratification of patients with chronic kidney disease (CKD) in primary care Principal Investigators: Professor Hazel Everitt , Head of the Primary Care Research Centre, Deputy Head of the School of Primary Care, Population Sciences and Medical Education at Southampton University and Deputy Academic Capacity Development Lead for the NIHR School of Primary Care Research. Dr Kristin Veighey , Academic Clinical Fellow in General Practice, and Honorary Senior Clinical Lecturer, University of Southampton. Co-Associate Director of the Southampton Academy of Research (SoAR). Team: Dr Simon Fraser Associate Professor of Public Health, and Consultant in Public Health Dr Kinda Ibrahim, is an Academic Pharmacist and Senior Lecturer within the Primary Care Research Centre at the University of Southampton. She is the deputy lead for the NIHR Applied Research Collaboration (ARC) Wessex Ageing and Dementia Theme and the Associate Director for career development Dr Emma Teasdale Research Psychologist and Qualitative Research Fellow in Primary Care Dr Michelle Myall, is a Senior Research and Implementation Fellow at NIHR Applied Research Collaboration (ARC) Wessex Kate Henegan-Sykes (co-applicant) is a member of the Primary Care Patient and Public Involvement and Engagement (PPIE) group Charles Pickering (collaborator) is a patient with chronic kidney disease. Starts: 01/12/2023 Ends: 30/11/2025 Funded by: NIHR School for Primary Care Research The kidneys are 2 small fist sized organs which sit in the back. Kidneys clean the blood. They take away extra water and waste and turn it into urine or ‘wee’. Chronic kidney disease (CKD) is a long-term condition. In CKD, the kidneys do not work as well. More than 1.8 million people in England are known to have CKD. It is thought there may be 1 million more who have not yet been diagnosed. This is because early CKD has no symptoms. So it's important to test for CKD in people who might have it. This includes people with diabetes, high blood pressure, and a family history of CKD. People with CKD are more likely to have, and die from, heart attacks and strokes. For a small group of people their CKD will get worse over time. This could mean that they need ‘renal replacement therapy’ (RRT). This is where a machine (dialysis) or a kidney transplant (someone else’s kidney put into them in an operation) does the job of the failed kidneys. This allows the person to survive. These treatments are very expensive. Along with transport to treatment centres they cost the NHS around £780m every year. Having CKD can also reduce a person’s quality of life. People who have, or might have, CKD should have the protein in their urine measured. This is a good way to see if kidneys are damaged. It can be used along with a blood test result to work out a ‘risk score’. This score can help to show which people are at most risk of their CKD getting worse. This means that they can be offered medicines and told about possible changes to their lifestyle and diet that might help reduce their risk. The score can also be used to reassure people who have a low risk. We want to understand why working out a person’s risk of CKD is not always done in general practice (GP) surgeries. To do this, we will first interview 20-30 GPs and practice nurses. These are the people who would do the risk scores for patients. They will come from GP practices across Wessex and Leeds. We will then hold 4-5 focus groups with GP practice teams, including GPs and nurses, but also pharmacists, practice managers, and reception/administration staff. We will ask them about how procedures could be improved to make sure CKD patients have their risk measured. This information will help us to work out how to improve the way that we measure risk in CKD.We will then plan a second study to test a new process. This new process will be developed from what we find out in this study.

db1daab2-c480-4960-beba-7955afeebc20 Wessex Frail2Fit – A feasibility and acceptability study of a virtual multi-modal intervention delivered by volunteers to improve functional outcomes of older adults with COVID-19 discharged from hospital Lay project title: Can we train volunteers to deliver exercise and nutrition support to older adults with frailty after a hospital stay? Project Partners: University of Southampton; University Hospital Southampton NHS Foundation Trust; Bournemouth University; Swansea University Principal Investigator: Dr Stephen Lim Team members: Dr Stephen Lim ( NIHR Clinical Lecturer in Geriatric Medicine, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Dr Samantha Meredith ( Research Fellow, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton ), Professor Mike Grocott ( Professor of Anaesthesia & Critical Care, Clinical and Experimental Science, University of Southampton), Professor Sandy Jack (Consultant Clinical Scientist in Anaesthesia and Critical Care, University Hospital Southampton NHS FT), Professor Jane Murphy (Professor of Nutrition, Ageing and Dementia Research Centre, Bournemouth University), Dr Judit Varkonyi-Sepp (Chartered Psychologist, Manager Behavioural Science Theme, NIHR Biomedical Research Centre, University of Southampton), Andrew Bates (Clinical Academic Intensive Care Nurse and Critical Care, Clinical and Experimental Science, University of Southampton), Luisa Holt (Physiotherapist, Research Fellow, University of Southampton), Professor Kelly Mackintosh (Professor in Sport and Exercise Sciences, Swansea University), Professor Melitta McNarry (Professor in Sport and Exercise Sciences, Swansea University), Cynthia Russell (patient representative), Steph Keith (Volunteer services - Patient Support Hub Coordinator), Kieran Fifield (Volunteer services - Project Support Officer) Start: 31/10/2022 Ended: 10/01/2024 Lay Summary Around half of older people over the age of 65 in hospital are affected by frailty. Frailty is a long-term health condition where your body loses its natural reserves. People with frailty take longer to bounce back from simple things, like a common cold, they tire easily, and need a bit more help to do things. Exercise and good nutrition are important to build strength in older people with frailty and can help them to perform their normal daily activities, like dressing, or cooking a meal. However, the motivation to eat well and to move more after a hospital stay can be hard for many older adults living with frailty. We found that we could train volunteers to encourage older people with frailty to eat well and exercise after a hospital stay. Hospital volunteers were trained by a health professional to deliver 3-month support to older people online through Zoom, or over the telephone. Five hospital volunteers completed the training. The volunteers were college students (3 female) with an average age of 16 years and were interested in gaining experiences working in a health setting. The exercises were seated strength movements using resistance bands. Volunteers were also taught to use the ‘nutrition wheel’ which is a tool to help start conversations with older people about their eating and whether they had lost any weight. Older people who were identified as at risk of undernutrition (not getting enough nutrients to support their health) were given booklets containing suitable nutrition advice. Twenty-seven older people with frailty signed up to receive support from the volunteers, and seventeen completed the 3-month programme. Eight older people completed the intervention online, and 9 opted for telephone support. The volunteers delivered 45 online sessions and 90 telephone calls from January 2023 to October 2023. After the programme we found that older peoples’ physical activity levels, quality of life, and appetite improved, and they maintained these improvements at 3-month follow-up. Only 1 minor incident happened during exercise where an older person strained their shoulder muscle using the resistance band. We interviewed volunteers, older adults, and their carers to find out more about what they thought of the exercise and nutrition support. Participants completing the online sessions enjoyed the group interactions and described the sessions like ‘a virtual cuddle’. They appreciated the support of the younger volunteers, who helped motivate and guide their exercise and nutrition behaviours. Participants receiving support through weekly telephone calls felt the volunteers were very encouraging and provided non-judgmental support. Overall, participants thought the online sessions helped build a better exercise routine, but the one-to-one telephone calls allowed more in-depth, personal conversations around nutrition. The young volunteers found listening to some of the illness stories of older people leaving hospital quite emotionally difficult. But they found the experience changed their perceptions on ageing. The volunteers had support from the trainer to help with any challenging conversations. Some older people found a key barrier to participating in the programme was their unmet care needs. Older people with better social care had resources to focus on their health, whereas older people who were alone and unsupported were more focussed on meeting their basic care needs rather than participating in the support programme. Overall, it was safe and feasible for volunteers to deliver exercise and nutrition support to older people living with frailty after a hospital stay. What we did with the new knowledge Our findings are helping to develop a volunteer toolkit, including recruitment packages, and training and support materials for future volunteer-led projects in hospital and in the community. Where next? We are working with various Universities and community organisations to develop a volunteer-led intervention to improve health and wellbeing of older people in different regions and for older people from diverse ethnic backgrounds. What did people say about the work? Volunteer: “It (training) was very thorough, and I knew what I had to do when I first started. Especially at the beginning, when I was invited to join one of the zoom sessions, to see the volunteer delivering the exercises. And also, the nutrition support; that was really helpful to understand how everything worked. Not only how it was meant to, but how someone delivered it. I thought the training was amazing, and I felt comfortable with what I was doing when I first started.” Participant receiving telephone support: “ What was very good was they (volunteers) didn’t push it too much. When I said I exercise 3 times a week, they didn’t push that and say, ‘oh, you should be doing this; you should be doing that’ - they didn’t push anything… They just encouraged you, which was good…. They were polite, finding out what I’d been doing, and what I hadn’t been doing I s’pose but not criticising me for not doing it… They’re concerned about you, getting people back to normal, aint they?” Participant receiving online support: “ I enjoyed doing the one online. It was interesting talking to people to see what other people were feeling and how they were all doing…. You sort of get that feeling that you’re part of something… it was fun. Strangely enough, I would find myself looking forward to the next one…” Participant receiving online support: “ Full of enthusiasm.. They (volunteers) weren’t just telling you what to do, they were rooting for you too, ‘come on, we can do this!” Publications Frail2Fit study protocol: a feasibility and acceptability study of a virtual multimodal intervention delivered by volunteers to improve functional outcomes in older adults with frailty after discharge from hospital | BMJ Open

7c1c5828-e040-4058-a214-a3f1d860532c CLECC Toolkit and background: Creating Learning Environments for Compassionate Care (CLECC) CLECC is a training and development programme that has been tested and measured over several years in different care environments. It is designed to help improve the wellbeing of health and care staff and make a difference to patient care. It’s easier for you to care for patients when you feel well cared for yourself An important part of feeling well cared for is working in a team that supports you, where members care about how you are and want to help you It’s hard to provide good care to patients when you feel stressed, isolated and unsupported CLECC aims to provide the conditions in which every team member feels able to be compassionate with each other and with patients We have developed and tested CLECC in real-life health and care settings to see how practical it is to use and to understand its impact in different settings. Our results to date indicate its promise for supporting staff learning and wellbeing, and the delivery of compassionate care. Professor Jackie Bridges Professor Jackie Bridges, a nurse by background and now Professor of Older People’s Care at University of Southampton in the UK, has led this work for over a decade. She has worked closely with experts from different fields, particularly in nursing practice, to develop the CLECC programme and the accompanying research. This page contains a facilitator guide and accompanying resources to help health and care teams learn about CLECC and use it in a practical real-world setting. CLECC is constantly being improved and revised with feedback from nursing, care staff and managers so please get in contact with any feedback. You can fill out the form below or contact us direct. Contact us Email arcwessex@soton.ac.uk Or via our Twitter page Let’s start with the basics What is CLECC and what evidence do we have that it works? Our two videos below can answer those questions https://vimeo.com/786850064 https://vimeo.com/786850368 Guides – How do we do that? I want to use CLECC A guide for facilitators – 101834 A4 Brochure - CLECC Facilitator Manual AMENDS - Jackie Bridges - FINAL .pdf Download PDF • 1.14MB I want to show CLECC to a team and get them thinking about how to use it Slideshow to accompany facilitator guide – download PDF here (32 pages) CLECC Whole Team Introductory Learning Activities slideset .pdf Download PDF • 13.63MB I want to tailor how I use CLECC based on understanding people’s experiences at work Download the questionnaires below: Workplace Learning Questionnaire – for use by teams to identify team learning climate strengths and issues Team CLECC Workplace Learning questionnaire for care settings .pdf Download PDF • 108KB Climate for Care Questionnaire – for teams to evaluate team working climate CLECC Team Climate for Care questionnaire .pdf Download PDF • 107KB Please take time to tell us why you are using CLECC