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af50ff28-5b02-41fa-bc1f-f9689464860e EnTech (Enabling Technology): Investigating the enabling and inhibiting factors to the use of internet-based support tools for caregivers of people with dementia, and how to promote engagement. Chief investigator: Prof Chris Kipps Neurologist, Clinical Director R&D University Hospital Southampton Dr Sarah Fearn Senior Research Fellow NIHR ARC Wessex (Ageing & Dementia) University of Southampton Team: Prof Cathy Murphy, Professorial Fellow Research, School of Health Sciences University of Southampton Prof Eneida Mioshi Professor in Dementia Care Research University of East Anglia NIHR ARC East of England Jane Ward Dementia Friendly Hampshire Amanda Wollam Public contributor with personal and professional (social care) experience of caregiving to people with dementia Start: 1 October 2024 End: 31 March 2026 Partners: Do rset HealthCare University NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, University of Southampton, University of East Anglia / NIHR ARC East of England, Dementia Friendly Hampshire, My Dementia Support. Our research We found that there were seven factors that influenced how able and/or willing care partners were to engage with online tools. Care partner-related factors included time, emotional impact & preparedness, support networks and signposting, personal preferences, the relevance and sensitivity of information, and digital access and skills. Website-specific factors included design and usability, as well as trust and credibility. Public involvement We are working with caregivers of people with dementia and local dementia charities in this project. On our team, we have two public contributors who both have lived experience of caring for someone with dementia. They will help us to design and carry out the research, to make sure it is relevant to caregivers and benefits them. 60 caregivers will participate in the research in interviews, focus groups or workshops. What we did with our new knowledge We have worked with the research teams / developers of the DemCon website and the FTDToolkit (both internet-based support tools) to improve their tool. We have worked with participants to co-produce recommendations for the design and implementation of internet-based support tools for carers of people with dementia in the future. We are connecting with other research teams / developers of internet-based support tools to advise on their design and implementation (including in France and Australia). We are looking to share the findings widely with research teams / developers working in this area to ensure design and implantation of these resources is maximised. We have contacted national charities and funders in the area to make them aware of our findings. Email lead researcher

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

Professor Ruth Bartlett - National lead for DEM-COMM, post-doctoral training scheme for applied dementia researchers across the ARCs < Back Alzheimer's Europe Conference DEM-COMM researchers in Geneva Professor Ruth Bartlett - National lead for DEM-COMM, post-doctoral training scheme for applied dementia researchers across the ARCs DEM-COMM was out in force at the 34th Alzheimer’s Europe conference in Geneva. We weren’t all wearing DEM-COMM emblazoned bobble hats (next time, maybe?) but there were twenty of us, all presenting work, supporting each other, and generally making the most of being at this important annual event. Our headline act was Dr Esther Loseto-Gerritzen from the University of Nottingham, ARC East Midlands. Esther gave her first plenary talk: ‘Online peer support for people with young onset dementia’ in the largest auditorium I’ve ever been in; it was like the United Nations (see photo below). So very well done to Esther. We’re all proud of you and look forward to supporting you in your new role as Junior Board member and representative of the INTERDEM Academy . Other DEM-COMM fellows shared their work in a parallel session or one of the quick oral presentations (5 minutes), or like me, presented a poster. Some people gave two or three presentations - extra brownie points to you guys. Here’s a list of all works in the order they were presented at the conference, followed by a collage of photos of each person giving their talk. Oral presentations Hannah Wheat ‘Findings of the realist mixed methods, longitudinal evaluation of the D-PACT (dementia personalised care team), primary care based, post-diagnostic, dementia care model’. Amirah Akhtar ‘Depression and dementia risk: exploring the impact of cognitive dysfunction during recurrent depression in middle-aged British South Asians: A qualitative study. Orri McDermott ‘Co-working with local Caribbean communities to raise awareness and normalise talking about dementia’. Neil Chadborn ‘Yaad participatory project: exploring memories with South Asian Communities to understand the context of family of care for people with dementia’. Marie Poole ‘Understanding post-diagnostic dementia support through football organisations to provide person-centred, culturally appropriate support for underserved communities’. James Faraday ‘Better mealtimes for people living with dementia: working with care homes to share good practice’. Rasa Mikelyte ‘Inclusion from the start: co-development and application of a priority setting method for dementia care research’. Emma Elliot ‘Physical activity interventions for hospitalised patients with dementia: systematic review’. Orri McDermott ‘Lived experience of advance care planning and shared decision making’. Rasa Mikelyte ‘Co-designing an easy-read measure of care-related quality of life: reflections on involving people living with dementia and their supporters’. Megan Rose Readman ‘Understanding the experience of hearing loss for people living with lewy body or parkinson’s disease dementia. Emmanuel S. Nwofe ‘DEM-SAFE: co-designing information campaigns to promote brain health and reduce dementia risk in south Asian and African Caribbean communities in the UK’. Amirah Akhtar ‘DEM-SAFE: Living well with dementia for south Asian and African Caribbean communities in the UK’. Posters Jiamin Du ‘Prevalence and correlates of neuro-psychiatric symptoms in individuals referred to a memory clinic, and the distress experienced by their caregivers’. Hannah Wheat ‘Triadic communication during dementia care: a conversation analytical study. Megan Polden ‘Music Make Us! The impact of singing and dancing interventions on people living with dementia’. Tamara Backhouse ‘How can we improve personal care assistance for people living with dementia to reduce refusals of care? A realist synthesis Juanita Hoe ‘Risk Assessment in people living with dementia: a systematic review’. Esther Loseto-Gerritzen ‘Online peer support for people living with dementia: a scoping review’. Hannah Wheat ‘Supporting dementia support workers to adapt to their role within a primary care setting: what works, for whom and in what circumstances’. Ruth Bartlett ‘Building capacity in applied dementia research’. Chris Poyner ‘Personalising domiciliary dementia care via co-designed computational matching: a study protocol’. Ilianna Lourida ‘Data-driven discovery of associations between prescribed medication and dementia risk: a systematic review’. Emmanuel S. Nwofe ‘Dementia risk factors and brain health: a scoping review of interventions to reduce social isolation and loneliness among minority ethnic populations in OECD countries’. Thanks to Sarah Smith for darting around the venue to take these shots, great job! Previous Next

aeb3153c-5d74-4046-b64a-afed7e369f76 Understanding the Networks, Effects and Teams involved in Community Alternatives to ACute Hospitalisation for Older People in Hampshire and Isle of Wight Region – CAtCH-NET Chief Investigator: Dr Natalie Cox, NIHR Academic Clinical Lecturer Geriatric Medicine, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton Team: Dr Stephen Lim, Principal Clinical Research Fellow, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton & Honorary Consultant Geriatrician University Hospital Southampton NHS FT Dr Sara McKelvie, NIHR Clinical Lecturer Primary Care Research, Primary Care Research Centre, Faculty of Medicine, University of Southampton Dr Carole Fogg, Senior Research Fellow, School of Health Sciences, University of Southampton Start: 1 October 2024 End: 31 March 2026 Partners: Hampshire and Isle of Wight NHS Healthcare Foundation Trust, Isle of Wight NHS Trust, Portsmouth Hospitals University NHS Trust, University Hospital Southampton NHS Foundation Trust, University of Southampton Background In Southern England, there are more older people than in many other parts of the country. Many of them live with several health conditions that can suddenly get worse. When this happens, they often need quick help from healthcare professionals. Whenever possible, it’s better for people to get this care at home rather than going to hospital. This matches the government’s plan to move more healthcare from hospital to the community. To support this, urgent care services have been set up across Hampshire and the Isle of Wight. These services aim to treat older people at home when they become unwell. But even with these services in place, many older people still go to hospital emergency departments. Some are sent home within 24 hours, which suggests they might have been safely treated at home instead. That’s why it’s important to understand how these urgent care services are working. Although they are close to each other, they are all set up differently. This research will look at the teams and networks of healthcare staff who help older people avoid hospital stays. We will interview people who work in these services and those who receive care from them. We’ll also study data from two local emergency departments to learn more about why some older people go to hospital and are sent home. By doing this, we hope to better understand how older people move through the urgent care system, and what helps or gets in the way of good care. We’ll also look at whether things like where someone lives, or whether they have a certain problem, affect their chances of going to hospital when it might not be needed. Our findings will help the NHS organisations design better urgent care services, so more older people can be safely cared for at home rather than in hospital. What have we found out? The analysis of the data is ongoing for CAtCH NET: We have data for UHS emergency department and have a cohort of 25,000 patients representing over 40,000 attendances. We are currently analyzing the data to understand the characteristics of these patients and factors related to discharge within 24 hours. We have completed interviews with staff who work within community urgent care services for older people, those who refer to them and those working closely with the emergency departments. Three main themes encompass the experiences of the participants: Complexity in urgent care service provision Complexity of work to avoid hospital admission Complexity of navigating an array of services and personnel What will we do with this new knowledge? We plan to create a report for the ICB and trust stakeholders. We will be working with HIW to conduct stakeholder meetings to discuss out findings and how they may inform ongoing service re-structuring. We have been conducting patient advisory groups meetings and have mapped their experiences to the findings of the qualitative data to aid in stakeholder discussions. We have also highlighted the study to a recent parliamentary call: 10.5258/SOTON/PP0162 10.5258/SOTON/PP0162

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Senior Research Fellow < Back Miguel Garcia-Argibay Senior Research Fellow Healthy Communities Coming soon Previous Next

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

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.

b0d87773-4d77-4612-90fe-50bd8c01a4e7 Development of policy recommendations to reduce the impact of COVID-19 on physical activity and mental health in individuals with multimorbidity: a mixed method study. Principle Investigator – Professor Mari-Carmen Portillo (University of Southampton) Team: Dr Danielle Lambrick (University of Southampton) Dr James Faulkner (University of Winchester) Dr Leire Ambrosio Gutierrez (University of Southampton) Associate Professor Beth Stuart (University of Southampton), Professor Suzanne McDonough (Royal College of Surgeons in Ireland) Professor Melitta McNarry (Swansea University) Dr Jacqui Morris (University of Dundee) Dr James Steele (Solent University) Mr Eric Compton (PPI Representative) Ms Katherine Baker (University Hospital Southampton) Mr Jack Shakespeare (UK Active) Dr Matthew Wade (UK Active) Start: January 2021 End: June 2022 Aim of the research: To understand the impact of COVID-19 and government restrictions on physical activity and mental health of people with long-term conditions, and propose recommendations to support and sustain their physical activity during and after COVID-19 or other pandemics. The findings of our study will inform stakeholder events across the UK including participants and policy-makers to draw action plans together. Background to the research: People, including those with long-term conditions, were told to use physical distancing, self-isolation and/or shielding during COVID-19 to protect themselves and others. Government guidance on physical activity may or may not have explained to people how to be physically active and take part in exercise during COVID-19. Physical activity has a positive effect on physical and mental health, so understanding the impact of COVID-19 on physical activity behaviours (amount, type and intensity of physical activity, resources) of people with or without long-term conditions is important. What did we find out? General physical activity (PA) guidelines are not suitable for people with long term conditions (LTCs). Existing generic PA guidelines by the World Health Organization are not suitable for everyone because differences in age, gender, physical abilities, PA preferences, and LTC severity may affect why people choose not to exercise Online resources are not accessible for all populations. During COVID-19 pandemic, provision of PA information was most commonly available online. Hence, PA programmes designed for the general population may not be appropriate for clinical groups from a safety perspective People living with one LTC engaged in more moderate and high intensity PA compared to those with multiple LTCs People living with one LTC present better overall quality of life and lower anxiety and depression than those living with multiple LTCs Physical activity guidelines should be specific. Local and national government guidelines were identified as unclear for those living with LTCs and should be more specific regarding what people who were shielding could and could not do What difference could this make? Developing health and social care strategies to sustain PA, optimise online/offline resources and communication to promote individuals with LTCs can remain physically active Helping policy and guidelines development, particularly for those living with multiple LTCs Why is this important? Understanding the impact of COVID-19 on physical activity and mental health is beneficial to informing LTC policy development, to better support people living with LTCs to be physically active during future periods of mobility restriction and/or pandemics Findings emerged in this project, will support The development of more tailored and person-centred physical activity (PA) guidelines. in the case of individuals who are advised to shield, guidance should be provided on how they can be physically active within and around their homes. For example, tailor their PA according to how they manage and cope with their LTC and its changeability is recommended Prioritising vulnerable groups is recommended. Therefore, people with LTCs are an important and specific group to consider when designing and delivering PA guidelines during shielding or social-distancing periods How we are sharing our findings Policy recommendations have been developed that capture strategies to sustain Physical Activity and optimise online/offline resources and communication to promote individuals with Long Term Conditions can remain physically active. Policy Brief .pdf Download PDF • 3.53MB Findings from the quantitative and qualitative phase of the project informed stakeholder engagement activities across all counties of the UK. Representatives from macro, meso and micro levels were approached as well as Patients and Public contributors. Publication: Full article: Accessibility and applicability of physical activity guidelines and recommendations for adults living with long term conditions during COVID-19 (tandfonline.com) https://doi.org/10.1371/journal.pone.0285785 Conference: Presented mixed methods results of the project in an international congress - 7th World conference on qualitative research (25-27 January 2023) Development of recommendations co-developed at event January 2023 Podcast planned for 2023

f6a3bc9c-cb06-4577-8723-be7beaceddc2 Development, evaluation and provision of an intervention for primary and community NHS staff to help carers and homecare workers supporting people living at home with dementia with their continence. Principal Investigator: Dr Catherine Murphy, Senior Research Fellow, School of Health Sciences, University of Southampton. c.murphy@soton.ac.uk Team: Jane Ward: former carer, Alzheimer’s Society Research Network Member, co-founder of Dementia Friendly Hampshire, Patient Research Ambassador: Prof Miriam Santer: Professor of Primary Care Research, Faculty of Medicine, University of Southampton: Prof Jill Manthorpe: Professor of Social Work, Director of NIHR Policy Research Unit in Health & Social Care Workforce, King’s College London – Associate Director of NIHR School for Social Care Research: Prof Mandy Fader: Professor of Continence Technology, School of Health Sciences, University of Southampton: Dr Leanne Morrison: Lecturer in Health Psychology, School of Psychology & Primary Care Research Centre, University of Southampton. Partners: Health Innovation Wessex, Alzheimer’s Society, Homecare Association, Carers UK, Queen’s Nursing Institute, Dementia UK, King's College London. Start: 1/06/2022 End: 1/4/2024 Plain English Summary of Findings We found that Healthcare professionals wanted an easy and quick to use intervention to sign-post carers to continence care guidance. Homecare workers would welcome resources aimed at having difficult continence conversations The findings led us to develop the first evidence-based website to support healthcare professionals to provide continence advice to the carers of people living with dementia. The intervention also provides carers with detailed, practical self-management guidance. The website is www.demcon.org.uk A summary of the work can be found in this article: C Murphy, B Bradbury, M Fader, L Morrison, M Santer, J Ward, H Chester. Supporting continence care for people living at home with dementia. 22 APRIL, 2024. Nursing Times What Next? The project has provided foundational findings for the next phase of work which includes developing a new intervention to support homecare workers to initiate continence conversations with people living at home with dementia. This work (DemCon2) is being funded by NIHR Three School’s Dementia Research Programme and will start Autumn 2024. Initial Summary (2022) Most of the 850,000 people living with dementia in the UK live in their own homes with support from family or friend carers. Dementia puts people at much greater risk of developing continence problems (with urine/wee or faeces/poo) than people without dementia of the same age. Continence and toilet-use difficulties cause many problems for both people living with dementia and carers, for example, sore skin, infections, embarrassment, anxiety, fear of going out, relationship breakdown, and expenses such as cleaning carpets or laundry. Dementia can mean that using pads or reminders do not work well for people as time goes by. Many carers find dealing with incontinence hugely distressing. They describe feeling poorly prepared and alone. Many find it difficult to talk about and want better support from health and care professionals. Recently we asked people living with dementia, carers and nurses to tell us what information and support they would find useful. From that, we developed a detailed, practical handbook specifically for carers, covering: · understanding why someone with dementia might become incontinent · helping people keep ‘dry’ · managing incontinence · talking about incontinence · continuing with daily activities and socialising. The handbook contains many ‘real-world’ quotes from carers and will be made freely available on www.continenceproductadvisor.org (an NHS endorsed website). This is a good start but requires carers to find and use the handbook by themselves. Most carers want proactive support from the professionals they see (either healthcare or homecare workers), but healthcare professionals often feel ill-equipped to help carers or advise homecare workers. Therefore, in this study, we will develop a new resource that will build on the handbook and equip healthcare professionals to: · start conversations with carers and homecare workers · discuss continence problems and help people choose goals · deliver practical advice to carers and homecare workers. To do this, first we will review research on similar resources and speak to up to 45 primary and community healthcare professionals and homecare workers to fully understand their needs and how a new resource could be used and useful. We know that many people living with dementia and carers have regular contact with homecare workers who often help with washing and going to the toilet. Then, we will work with carers, people living with dementia, healthcare professionals, homecare workers, care commissioners or funders, voluntary groups and professional bodies to develop the resource. We will ask up to 60 people living with dementia, carers, homecare workers and healthcare professionals to use the resource and tell us what they think. We will then make changes to improve the resource. We want this resource to be used by as many primary and community healthcare professionals as possible so that they can support homecare workers and family carers. So, throughout this project, we will ask people about the best way to make it both useful and accessible. It will be freely available via www.continenceproductadvisor.org and we expect adopted and recommended by a range of organisations such as the Alzheimer’s Society, Skills for Care, Homecare Association and professional groups.

55265102-c760-4322-93ed-ed8448f1546f Non-digital support for maintaining physical activity in people with long-term conditions – within Maintenance Of physical acTivity beHaviour (MOTH) programme Start Date 02/10/21 End Date 30/09/23 Researchers: Lead - Professors Mary Barker and Maria Stokes Joint Lead - Professor Suzanne McDonough Co-Applicants - Professor Maria Stokes, Dr Paul Clarkson, Dr Chloe Grimmett, Dr Euan Sadler, Dr Nisreen Alwan, Dr Aoife Stephenson, Dr Katherine Bradbury, Dr James Faulkner, Mr Paul Muckelt, Dr Dorit Kunkel, Mrs Luisa Holt amd Dr James Gavin Summary Being active is important to prevent and help manage long-term conditions (LTC). Previous research shows that being active can help people to do the things that they want to do for longer, reduce pain and improve quality of life. There are many community and NHS programmes that help people with a LTC to start being active, however, these programmes only last for a short period of time. Staying active in the longer-term is more difficult and there is often a decrease in activity over time following the completion of a programme or service. Previous research has shown that programmes or interventions that help people to start being active may not necessarily have the right components to help people to stay active. This project will plan and develop a new intervention that will support people with one or more LTCs to stay active, after taking part in an NHS and/or third sector ERSsphysical activity referral scheme (PARS). Our current research explores factors that help people with LTCs to stay active to allow these to be integrated into plans for the new intervention. The intervention will be non-digital to ensure that it is available to as many people as possible, regardless of access to the internet or a digital device. We know from previous work that it is important that any new intervention fits in with healthcare systems and how people manage their condition. We are therefore currently working with people with LTCs and health and social care professionals to understand how such an intervention could be delivered in practice. In this project we will use previously gathered information to plan the new service. We will recruit people with LTCs from ERSs PARS to take part in interviews to understand their needs and expectations for the intervention. We will also undertake interviews with health and social care professionals and ERSPARS practitioners to develop the intervention’s content. This will allow us to develop the prototype of the intervention and then ask people with LTCs who have taken part in a programme to pilot it and provide feedback through interviews. Once developed, we will plan a larger study to test the intervention’s potential with groups of people who have come to the end of an ERS PARS in the NHS and/or the third sector. This study will help us to gain feedback from people with LTCs using the intervention in real life settings to make further changes. It will also help us to understand whether the approaches to the research, such as how to recruit people to take part, are successful. This information will be used to improve the intervention and to support a larger trial to assess the effectiveness and cost-effectiveness of the intervention. What did we find out? This research included: • Phase 1: We interviewed 15 people living with long-term health conditions (LTCs) and nine NHS healthcare professionals to find out their experiences of being involved in an exercise referral scheme. This included what support they would want in future, as a participant (i.e., people with LTCs) and provider (i.e., healthcare professionals). • Phase 2: Follow-up workshops with LTC patients and multi-sectoral professionals to begin designing a pathway to support physical activity maintenance for people living with LTCs. Professionals shared their experiences from healthcare, leisure and community and voluntary sectors. This research has created a better understanding of the ways in which we might best support people with LTCs to stay physically active, and improve their health and wellbeing following an exercise referral scheme. Two areas of improvement were identified: 1) Better partnership working between people with LTCs, health and social care, leisure and voluntary sectors within Wessex 2) Ensuring people with LTCs have appropriate support with self-management of their lifelong physical activity levels What difference can this new knowledge make? • Better understanding of the factors preventing and enabling participation in exercise referral schemes across Wessex, can help us identify how structured exercise can benefit people with LTCs long-term, especially by highlighting the benefits and future support needs in physical activity. • It gave us understanding of people’s experiences of undertaking a physical activity referral scheme to help manage their LTC(s). This was supported by health professional’s views, having referred, delivered and/or commissioned an activity scheme • In future, this knowledge can inform the development of an integrated care pathway interlinking healthcare, social and community services to support people with LTCs to maintain their health and physical activity long-term, from a view to change physical activity behaviours. What did we do with our new Knowledge • We presented the results at the Health Enhancing Physical Activity (HEPA) Europe 2024 Conference in Dublin (August 2024) • We submitted a research paper for journal publication • Dr James Gavin ran a series of ‘Active Living’ community cafés across Southampton to share the research with the public living with LTCs and their carers. • This has led to additional grant funding and partnerships with Energise Me, Saints Foundation, Communicare, and Southampton City Council, to begin co-designing a multi-sectoral pathway within the city for the wider LTC population, not just those having undertaken an exercise referral scheme. • On January 8th 2025, we will run workshops with professional stakeholders including the HIOW Integrated Care Board, to find agreement on a ‘prototype’ pathway. Where next? •We have submitted the findings to the journal, Int J Behav Nutr Phys Activ December 2024. •Move Consulting Ltd. are supporting us with our professional stakeholder workshops (Jan 2025). •The co-lead, James Gavin, has secured £14,900 Wessex Health Partners funding to continue the community cafes and develop a pathway plan. •We will build upon our community-based partnerships with Saints Foundation, Communicare, Thornhill Baptist Church, and Energise Me as the HIOW Living Well Partnership. •Follow-on funding will be sought from the NIHR Research for Patient Benefit programme (tiers 2/3) in Spring 2025. Testimonials for Active Living Cafes "it's really good that you don't want to reinvent the wheel. My slight critique of the community cafes that have been set up is that you don't have to reinvent them .” “There are already community groups doing very similar things around…I know it's been brilliant that you have been partnering with people like Thornhill Baptist Church. They do wonderful things, some wonderful community events… My recommendation is to join and work with them , and that's what you're doing.” “It's a better strategy than trying to set up something new and try and hope that people come to it with a long-term condition. I think it's much better to go to people rather than expect people to come to you ."

6dc4c269-ddb7-41c3-afd8-8173c69a4651 ADOPTED ActMed-VW - Healthcare professional's experiences of Access to Medication for people on Virtual Wards who are in their last year of life Virtual wards provide acute, hospital-level care in an individual’s own home, rather than in a hospital or hospice. They are also known as Hospital at Home services. We know that virtual wards can care for people who are in their last year of life. For individuals approaching the end of life, control of symptoms requires prompt access to medication. We know access to palliative care medication can be challenging in the community. There have also been reports of difficulty accessing medication on virtual wards; however, it is not known if there are specific issues accessing palliative care medications on virtual wards. This study aims to investigate access to medication for adults on virtual wards who are in their last year of life. We aim to understand the experiences of healthcare professionals so that we can make recommendations on how to improve access to medication in the future. We will ask healthcare professionals working in virtual wards to answer questions in an online survey. We will ask doctors, nurses, pharmacists, and allied health professionals such as physiotherapists to complete the survey. We will ask them about what works well and what does not. We will ask them about the challenges they have faced, and what would help them to minimise or eradicate these. We will also interview 20 healthcare staff. This will include both professionals who completed the survey and individuals who oversee the management of virtual ward services. We will explore in more detail examples of good practice and the processes that need to be in place to ensure straightforward, fast access to medication. We will consult with clinical and policy experts on potential solutions to the challenges identified in the study findings. We will also work with these experts to develop recommendations for policy and practice. Project team includes: Co-PI - Dr Nicola Andrews Co-PI - Prof Sue Latter Co-I Dr Natasha Campling Co-I Dr Sara McKelvie Research Fellow Dr Dan Aze