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0f5a7259-3857-4aa4-8b2c-0c628421e76a Interventions to support physical activity for adults (MOTH) Maintenance Of physical aTivity beHaviour (MOTH) programme Also see Digital support for maintaining physical activity in people with long-term conditions and Non-digital support for maintaining physical activity in people with long-term conditions – within Maintenance Of physical acTivity beHaviour (MOTH) programme Principal Investigator: Professor Mary Barker Deputy Lead: Professor Mary Barker ( Professor of Psychology and Behavioural Science) Professor Maria Stokes (Professor of Musculoskeletal Rehabilitation, School of Health Sciences, University of Southampton, UK Head of Active Living Research Group) Team members: Dr James Gavin, Luisa Holt, Professor Jo Adams , Dr David Culliford , Professor Suzanne McDonough (Royal College of Surgeons in Ireland; Visiting Prof at UoS), Dr Aoife Stephenson (Royal College of Surgeons in Ireland), Dr James Faulkner (University of Winchester), Mr Ranj Parmar , Mr Jem Lawson (Public contributors), Dr Euan Sadler , Dr Dorit Kunkel , Dr Simon Fraser , Professor Sandy Jack , Professor James Bilzon (University of Bath), Dr Simon Jones (University of Bath), Dr Enhad Chowdhury (University of Bath), Mr Jem Lawson and Mr Ranj Parmer (public contributors) Start: October 2019 Ends: 31 December 2023 Project Partners: Royal College of Surgeons in Ireland, University of Winchester, Bournemouth University, University of Portsmouth, Wessex Clinical Research Network, University of Bath, NHS, AHSN Lay summary Physical activity is an important part of managing and preventing long-term conditions (LTC), through supporting people to remain active, improve symptoms and reduce future problems. A variety of digital and non-digital programmes and tools exist, such as exercise referral schemes and websites or mobile applications, to support people to start being active. However, these programmes/tools are often less effective at helping people to stay active in the longer term. The MOTH programme aims to identify existing digital tools and their components that help people with LTCs to stay active and understand the factors that support or inhibit their use in the NHS. The programme is also working with exercise referral schemes to evaluate and understand the needs of participants to support physical activity after the scheme has ended. Ultimately, the MOTH programme aims to develop digital and non-digital support that is usable, accessible and relevant to help people with LTCs to stay active. In doing so, the programme is aligned to many of the NHS long-term plan priorities, such as ‘responding to population needs’, ‘supporting people to age well’ and ‘increasing equitable provision of resources’

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9e2c7f6f-813a-4237-9695-46d21cbe9cea COMPLETED: 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. NIHR Three Schools Dementia Research Programme: NIHR School for Social Care Research, NIHR School for Primary Care Research and NIHR School for Public Health Research Team Lead investigator : Dr Cathy Murphy, Senior Research Fellow, School of Health Sciences, University of Southampton Co-i: Prof Mandy Fader, Professor of Continence Technology, School of Health Sciences, University of Southampton Co-i: Prof Miriam Santer, Professor of Primary Care Research, Faculty of Medicine, University of Southampton, NIHR School for Primary Care Research, Bournemouth based GP Co-i: Dr Leanne Morrison, Lecturer in Health Psychology, School of Psychology & Primary Care Research Centre, University of Southampton, NIHR School for Primary Care Research Co-i (PPI): Jane Ward, Alzheimer’s Society Research Network Member, co-founder of Dementia Friendly Hampshire, Patient Research Ambassador Co-i: 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 Start date: 1st June 2022 End date: 28th Feb 2024 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 we did with the new knowledge The findings have led to the first evidence-based intervention to support healthcare professionals to provide continence advice to the carers of people living with dementia. The intervention supports healthcare professionals to initiate conversations and then to sign-post carers to detailed, evidence based self-management guidance. The website can be accessed here: www.demcon.org.uk What are we doing 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.

Mapping pathways of response for adult & child victim-survivors of domestic abuse in Southampton City Have you been affected by domestic abuse? Do you live in Southampton? Hide this page in an emergency Jump to tips on safe web browsing A team of researchers from the Faculty of Medicine at the University of Southampton are doing an evaluation to learn more about how individuals and families are referred to Southampton City Council for support with a domestic abuse situation. We want to learn more about the experiences of those individuals and families, after they are referred for support. The goal is to help the Council improve the services they can offer, for people who are experiencing domestic abuse. You can take part in this evaluation by having an ‘interview’ – a discussion with a researcher. This would be completely confidential and would take about an hour. Would you like to share your experience? We would be very interested to hear from you. If you have any questions, or if you would like to take part in this evaluation, please contact: Katerina Porter at 02380 594 644 or k.a.porter@soton.ac.uk or Eunice Aroyewun at 02380 594 554 or e.o.aroyewun@soton.ac.uk . Please watch this video to learn more. SAFE BROWSING TIPS Domestic abuse is not just violence and often includes controlling behaviour. If you are scared your partner will find out you’ve been here, here’s how you cover your tracks. How do I turn on private browsing on Google Chrome (incognito window)? Start Chrome and click the three dot icon in the top right corner of the screen. Click New Incognito Window and start browsing. You can press Ctrl + Shift + N to bring up a new incognito window without entering the Chrome settings menu. Before opening the browser, you can right click the Chrome icon, then select New Incognito window How do I enable InPrivate browsing in Microsoft Edge? Open Microsoft Edge, and click on the three Dots at the top right corner of the browser Window. Now click on New InPrivate window. You can press Ctrl + Shift + P to bring up a new InPrivate window without entering the settings menu. Before opening the browser, you can right click the Edge icon, then select New InPrivate window How do I enable InPrivate browsing in Internet Explorer? Open Internet Explorer, and click on the Tools icon at the top right corner of the browser Window. Now click on Safety then InPrivate Browsing. You can press Ctrl + Shift + P to bring up a new InPrivate window without entering the settings menu. Before opening the browser, you can right click the Edge icon, then select New InPrivate window How do I turn on private browsing in Mozilla Firefox? Click or tap the Open menu button in the top right side of the browser window. It has the shape of three parallel lines. Then, choose New Private Window. You can press Ctrl + Shift + P to bring up a New Private Window without entering the settings menu. How do I turn on private browsing in Safari on an iPhone? Tap to open Safari, then tap the 2 overlaid squares in the bottom right corner, then tap Private to enable Private Browsing Mode and finally tap Done and start browsing. When finished be sure to tap the 2 overlaid squares again and then tap x on each page to clear the pages before finally tapping Private to go back to normal. How do I turn on private browsing on an Android phone? Tap to open Internet, then tap tabs in the bottom right corner, then tap Turn On Secret Mode and start browsing. When finished be sure to tap x on each page to clear the pages before finally tapping Turn Off Secret Mode to go back to normal. Information from STOP DOMESTIC ABUSE - https://stopdomesticabuse.uk/cover-your-tracks

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

2eeccab4-e624-4137-9443-6893d09b0589 COMPLETED: Change in treatment burden among people with multimorbidity: Protocol of a follow up survey and development of efficient measurement tools for primary care Principal Investigator: Professor Simon Fraser Start Date: 01 October 2020 End Date: 30 September 2024 Background Treatment burden is the effort required of patients to look after their health and the impact this has on their functioning and wellbeing. It is likely treatment burden changes over time as circumstances change for patients and health services. However, there are a lack of population-level studies of treatment burden change and factors associated with this change over time. Furthermore, there are currently no practical screening tools for treatment burden in time-pressured clinical settings or at population level. This is a three-year follow-up study of a cross-sectional survey of 723 people with multimorbidity (defined as three or more long-term conditions; LTCs) registered at GP practices in in Dorset, England. The survey collected information on treatment burden (using the 10-item Multimorbidity Treatment Burden Questionnaire (MTBQ) and a novel single-item screening tool), sociodemographics, medications, LTCs, health literacy and financial resource, as at baseline. Descriptive statistics were used to compare change in treatment burden since the baseline survey in 2019 and associations of treatment burden change were assessed using regression methods. Diagnostic test accuracy metrics were used to evaluate the single-item treatment burden screening tool using the MTBQ as the gold-standard. Routine primary care data (including demographics, medications, LTCs, and healthcare usage data) were extracted from medical records for consenting participants. A forward-stepwise, likelihood-ratio logistic regression model building approach was used in order to assess the utility of routine data metrics in quantifying treatment burden in comparison to self-reported treatment burden using the MTBQ. What we found Out •Among over 800 people aged 55 or older, living with multiple long-term conditions across Dorset, high treatment burden was common (about a fifth of all survey respondents) •Making lifestyle changes and arranging appointments were particular sources of difficulty. Having limited health literacy and experiencing financial difficulty were strongly associated with greater treatment burden. Having more conditions and more prescribed regular medications were also associated. •A single-item treatment burden measure was only moderately good at discriminating between high and non-high burden. •Among 300 of these people who responded to a follow up survey after an average of two and a half years, about a third experienced an increase in treatment burden. This was linked to having more than five long-term conditions and living more than ten minutes from the GP, particularly for people with limited health literacy. •A slightly revised single-item measure still only performed moderately, so it needs more development before being used in general practice. •Using data from participants’ GP records also only performed moderately at reflecting high treatment burden, so further development is needed to use routine health records to identify those at risk of high treatment burden. What difference will this knowledge make? •Given the high prevalence of high treatment burden in people living with multiple long-term conditions, healthcare professionals can legitimately engage with patients on this issue to recognise and seek to minimise avoidable burden. •Health systems (including Integrated Care Boards/Systems) should include consideration of treatment burden in policies and in service design and commissioning, aiming for ‘minimally disruptive medicine’. •Healthcare professionals can anticipate that treatment burden tends to worsen over time in a significant proportion of people living with multiple long-term conditions. •Further development of the short treatment burden questionnaire is underway in a separate NIHR-SPCR-funded study and could be introduced in primary care if it performs better. •Identifying ‘burden’ in data will be investigated in much more detail in a further NIHR-funded study Why is this important for patients, health and care providers and policy makers ? •Factors such as improving access to primary care, particularly for those living further away from services, may reduce treatment burden. •Different modes of health service delivery to specifically meet the needs of those patients more likely to feel overburdened may be needed •Improving health literacy should be an important goal for the health system •Overburdened patients may be more likely to struggle with adherence to self-management •Being overburdened may result in greater use of unscheduled care. This is a priority for the NHS and the link needs further investigation In related work we published a paper on a systematic review of system factors influencing treatment burden, led by a Southampton MSc Public Health student. This has identified important gaps in the evidence map for treatment burden. Providers and policy makers need to recognise the financial and administrative burden for patients and the lack of evidence on this: doi.org Influence of health-system change on treatment burden: a systematic review Background Treatment burden is a patient-centred concept describing the effort required of people to look after their health and the impact this has on their functioning and wellbeing. High treatment burden is more likely for people with multiple long-term conditions (LTCs). Validated treatment burden measures exist, but have not been widely used in practice or as research outcomes. Aim To establish whether changes in organisation and delivery of health systems and services improve aspects contributing to treatment burden for people with multiple LTCs. Design and setting Systematic review of randomised controlled trials (RCTs) investigating the impact of system-level interventions on at least one outcome relevant to previously defined treatment burden domains among adults with ≥2 LTCs. Method The Embase, Ovid MEDLINE, and Web of Science electronic databases were searched for terms related to multimorbidity, system-level change, and treatment burden published between January 2010 and July 2021. Treatment burden domains were derived from validated measures and qualitative literature. Synthesis without meta-analysis (SWiM) methodology was used to synthesise results and study quality was assessed using the Cochrane risk-of-bias (version 2) tool. Results The searches identified 1881 articles, 18 of which met the review inclusion criteria. Outcomes were grouped into seven domains. There was some evidence for the effect of system-level interventions on some domains, but the studies exhibited substantial heterogeneity, limiting the synthesis of results. Some concern over bias gave low confidence in study results. Conclusion System-level interventions may affect some treatment burden domains. However, adoption of a standardised outcome set, incorporating validated treatment burden measures, and the development of standard definitions for care processes in future research would aid study comparability. What are we going to be doing next? Several related studies are already underway: In the NIHR-funded MELD-B study, more in-depth exploration of the experience of living with multiple long-term conditions is underway. This study is exploring in depth the representation of the work/burden in electronic health records. See short animation here: https://www.youtube.com/watch?v=7mZptrMAapY In the NIHR SPCR-funded SPELL study, a Short Treatment Burden Questionnaire is being developed and tested, building on our findings. https://spell.blogs.bristol.ac.uk/ Work has been instigated with the Dorset Public Health team and ICS to explore the value of adding treatment burden concepts to frailty indicators to identify people who might benefit from a ‘carousel clinic’ which supports people with frailty/prefrailty in various ways. This work is ongoing With some additional ARC funding we are working with care coordinators in primary care in Southampton to take forward the learning from this study and the MELD-B study ( https://www.meldbstudy.org.uk/ ) to support and enhance their work with people living with multiple long-term conditions (MLTC): Https://www.arc-wx.nihr.ac.uk/research-areas-list/avoiding-care-escalations-through-targeted-care-coordination-for-people-with-multiple-long-term-conditions-%E2%80%93-a-knowledge-mobilisation-project Publications https://doi.org/10.3399/bjgp.2020.0883 https://doi.org/10.3399/BJGP.2022.0103 Simon Fraser delivered a BJGP podcast on this work which can be found here: https://www.youtube.com/watch?v=MLqrp4HOb7s

PPI/E Strategy 2021-2024 summary report The page has a summary of our strategy for involving people in our research - sometimes this is referred to as Patient and Public Involvement and Engagement. We have created a separate page with a detailed version of our strategy which can be used by screen readers, and there is also a glossary to explain some of the language used in the documents. (it might be useful to have this open in another TAB on your browser for reference). If there is something not quite right then email us at arcwessex@soton.ac.uk for help or any comments. Involving the Public in our Research Patients and the public are at the heart of our vision to improve the health and well-being of people across Wessex[i]. The knowledge, experiences and support of patients and the public are essential to ensure that our research goals and solutions are relevant, prevent waste, and bring the greatest possible benefits to society. We use the terms involvement[ii] and engagement[iii] to describe activities that aim to prioritise the public voice in our health and social care research. We aim to deliver high quality public involvement and engagement for health and social care. his document summarises our ambitions and gives a few examples of activities we will deliver in our first year (April 2021-March 2022). We listen to voices relevant to our research priorities that reflect the diversity of the local population – ensuring the underserved[iv] have a voice. This year we will: Work with the leads of each project starting in 2021 to identify who is underserved in the context of each project. We will prioritise the voices of these underserved groups in our involvement activities. Publish guidance documents on how to improve virtual meeting accessibility. Inclusive Opportunities We have a culture that respects different perspectives, values contributions and supports mutually respectful and productive relationships. This year we will: Work with our public members to develop and trial approaches to blending face-to-face and virtual activities as we adapt to changing social distancing restrictions. Develop induction materials that outline the support structures available in ARC Wessex for involvement and engagement activities. Working Together We capture, monitor and share our learnings. This year we will: Adapt an involvement impact tool so we can use it to monitor the impact of our activities. Impact We provide health research communities of Wessex (including public) adequate PPI/E training, support and learning opportunities. This year we will: Develop a course supporting the public with their confidence contributing to virtual meetings. Evaluate a pilot mentorship scheme, where we paired new PhD students with a public partner to provide mentorship in involvement and engagement. Deliver a training course focused on skills for public involvement to our researchers. Support and Learning We use innovative approaches and good communication to stimulate knowledge-of, and interest-in, our research. This year we will: Collect a baseline measurement (ie starting position) of how well feedback processes are embedded in our involvement and engagement activities. This will include understanding how regularly public members are told what difference their contributions have made to research. Communications We involve the public at strategic and operational levels. This year we will: Involve the public in decisions about which projects we will fund this year. Collect feedback from our public members who have strategic positions to understand if they feel heard and included in decision-making. Governance [ii] Public involvement activities describe activities where research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. [iii] Engagement activities describe activities where information and knowledge about research is provided to and shared with the public. [iv] Underserved is the term we have chosen to use to describe people who are less well included in research. It is important to recognise that underserved groups are context-specific. There is no single, simple definition to describe all underserved groups. Want to know more? You can read our full strategy - or download a version as a file. Have questions or comments? Email ppiesupport @uhs.nhs.uk

Web-based Implementation Toolkit (WIT) Quick links: Project Outputs Buy-in and Engagement Fit with Health and Social Care Systems Alignment with Health and Social Care Priorities Outcomes and Impact Adoption and Spread Checklist, webinar and resources Quick links: Project Outputs This Web-based Implementation Toolkit (WIT) is designed to be easy to use and intended for a variety of users, projects and settings where implementation is planned or being considered. Implementation is the attempt to introduce a new intervention, innovation or policy developed through research and apply it to health and/or social care and the third sector. WIT provides you with an interactive Implementation Wheel, Checklist and bite-size Webinars (average 10 minutes) to support you through your implementation journey. Who is WIT for? WIT recognises the need to provide freely available, accessible and simple to use tools that focus on key considerations at the outset of a project. WIT was co-produced through interactive workshops with health and social care professionals, third sector organisation professionals, academics and members of the public. Anyone looking to understand more about or engage in implementation. Why use WIT? When to use WIT From the beginning – when first considering and designing a project Throughout all stages of your implementation journey and beyond To guide you through implementation considerations for your project There are six wheel domains to help you consider what is required for implementation. Click on a domain segment to find out more. Adoption and Spread Project Outputs Buy-in and Engagement Fit with Health and Social Care Systems Alignment with Health and Social Care Priorities Outcomes and Impact How to use WIT Use the interactive Implementation Wheel, Checklist and bitesize Webinars to support you on your implementation journey and beyond. The six Wheel domains can be used iteratively, and in no particular order. The Checklist is downloadable and consists of the same domains as the Wheel. You can use this to complete with your team and check progress of your implementation journey. The Webinars , approximately 10 minutes duration, provide sessions relating to the six Wheel and Checklist domains and also to an introduction to implementation and implementation theories and frameworks. Hover on keywords to see definitions Other words in bold represent key learning points The Resources section provides suggestions for other resources you may find helpful. implementation Implementation is the attempt to introduce a new intervention, innovation or policy developed through research and apply it to health and/or social care and the third sector. Feedback via our short survey If you fulfil the criteria on the attached poster , Researchers from the School of Health Sciences, University of Southampton/NIHR ARC Wessex would like you to test WIT by providing feedback via a short survey . Or alternatively scan the QR code. Thank you. Contact us If you have any questions about WIT, please contact: C.F.Brooks@soton.ac.uk Disclaimer The development of WIT has been supported by the NHS Insight Prioritisation Programme (NIPP). The views expressed are those of the authors and not necessarily those of the NHS. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of this website. How to cite Brooks, C.F., Lund, S., Kryl, D., and Myall M. (2023) Web-based Implementation Toolkit (WIT). University of Southampton. Available at: www.arc-wx.nihr.ac.uk/web-implementation-toolkit Accessibility We are committed to providing a website that is accessible to as many people as possible. We are actively working to increase the accessibility and usability of the website.

Data Sets Machine learning methodologies are increasingly popular in health care research. This shift to integrated data science approaches necessitates professional development of the existing health care data analyst workforce. To enhance a smooth transition, educational resources need to be developed. Barriers to accessing real healthcare datasets, vital for health care data analyses methodologies training purposes, include financial, ethical and patient confidentiality concerns. Synthetic datasets mimicking real-world complexities offer a simpler solution. On this page, we present a synthetic dataset which mirrors routinely collected primary care data on heart attack and stroke among the adult population. The data incorporates much of the practical challenges encountered in routinely collected primary care systems such as missing data, informative censoring, interactions, variable irrelevance, and noise and can be used for training in methods which handle these difficulties. The intent is for the user to build models of heart/stroke risk using survival-based methodologies. By sharing this synthetic dataset openly, our goal is to contribute a transformative asset for professional training in health and social care data analysis. The dataset covers demographics, lifestyle variables, comorbidities, systolic blood pressure, hypertension treatment, family history of cardiovascular diseases, respiratory functioning, and experience of heart-attack and/or stroke. This initiative aims to bridge the gap in sophisticated healthcare datasets for training, fostering professional development of the health and social care research workforce. Development of this dataset was funded by ARC Wessex and the National Centre for Research Methods (NCRM). Synthetic Data set CSV cvd_synthetic_dataset_v0.2_metadata.xlsx

de23ed25-467a-496e-b29a-68a949839608 ADOPTED: FLOWS Planning for Frailty: Optimal Health and Social Care Workforce Organisation Using Demand-led Simulation Modelling Principal Investigator: Dr Bronagh Walsh, Associate Professor, School of Health Sciences, University of Southampton. Team: Professor Peter Griffiths , School of Health Sciences, University of Southampton: Dr Carole Fogg, School of Health Sciences, University of Southampton: Mr Mike Hepburn, Southampton Business School, University of Southampton: Dr Abigail Barkham, Southern Health NHS Foundation Trust: Honorary Professor Martin Vernon, Tameside and Glossop Integrated Care NHS Foundation Trust: Professor Lee-Ann Fenge, Department of Social Work and Social Sciences, Bournemouth University: Professor Jane Ball, School of Health Sciences, University of Southampton: Professor Sally Brailsford, Southampton Business School, University of Southampton: Ms Francesca Lambert, PPI lead, School of Health Sciences, University of Southampton. Start: 01/11/2022 End: 31/10/2025 Background: As the population ages, robust workforce planning to meet future demands for health and social care by older people is needed. A lack of evidence in this area has led to a mis-match between the health and social care demand from the ageing population and the current workforce capacity. The proposed study will use demand-led simulation modelling of the workforce required to address the specific challenge of providing health and social care for the growing numbers of older people living with frailty. Aims & Objectives: The aim of the study is to use simulation modelling to explore long-term trends in frailty-related health and social care use in the ageing population and its implications for future workforce size and competencies to support high quality care. The primary objective of this study is the creation of a simulation model that will inform service and workforce planning to meet health and social care needs associated with frailty. Methods: The study will use a System Dynamics design to develop and test the simulation model. Work packages comprise a scoping review, gathering of public and professional perspectives on service provision via a survey and stakeholder engagement activities, and analysis of linked health and social care data, all of which inform the simulation modelling work package and development of a workforce planning toolkit. Timelines for delivery: The scoping review will be completed in year 1. Routine health and social care data specification and extraction will occur in year 1, as will service mapping and classification and survey preparation. Survey data collection and analysis will occur in year 2. Simulation modelling will commence in year 2, with validation, sensitivity analyses and scenario modelling in year 3. Development of workforce guidelines and toolkit will occur in. year 3 Stakeholder engagement, including patient public involvement, will run throughout the study, reviewing study results and informing development of the other work packages. Anticipated impact & dissemination: This study will provide new, direct evidence about the impact of frailty on health and social care workforce requirements within the ageing population The improved understanding of workforce requirements offered by this study will inform workforce planning for frailty services across health and social care, ensuring future benefit for patients through provision of timely and appropriate care and a workforce planning toolkit to support local decision-making.

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

a7ea3c51-ca08-45ba-a500-e478bca6eb43 COMPLETED: Motivating and sustaining engagement of young people in improving their health and that of their communities Prinicpal Investigator: Professor Mary Barker Team: Kathryn Woods-Townsend, University of Southampton, James Toop, Bite Back 2030, Matthew Ryan, University of Southampton, Joanna Sofaer, University of Southampton, Pathik Pathak, University of Southampton Start Date: 1 April 2023 End Date: 30 September 2024 Background Calls by young people for increased involvement in decisions about their health and futures are echoed by WHO and UNICEF. These reflect threats to their health from inequalities and climate change, exacerbated by COVID-19. To be “architects of their own future” and have decision-making power, young people need training and opportunities to build confidence, and structures and processes that allow them to be involved in decision making. Aims We aim to explore how best to engage and maintain engagement of young people in these activities with a view to improving their health and well-being and that of their communities Our specific objectives are to: develop and test a training course for young people in skills to support participatory action research into health and well-being; test the effectiveness of arts-based approaches in engaging young people in health improvement; understand how to create a reliable, scalable and sustainable model for effective youth activism; evaluate democratic innovations to engage young people in decision making processes to influence health policy. What did we find out? Through our project we found that young people can meaningfully participate in decision making on topics that are important to them. During the year young people were engaged in two separate ways: Firstly, BiteBack 2030’s youth advocacy programme was analysed and essential components of its success extracted. Those factors included establishing open two-way channels for communication, Working to create an environment where young people’s and staff views are equally valued, Supporting staff to develop excellent facilitation skills, Investing in young people’s skills, Campaigning on issues that young people feel are important and current and Reviewing success and challenges of each campaigns and adapt activities in response. Secondly, young people were successfully trained in research skills, advocacy and democracy during a 12-week Young Researcher Training Programme. The training programme allowed young people to investigate a health topic that was important to them and collect data from their peers and community. Their projects ranged from looking at exam stress, vaping, benefits of youth participation, to women’s health issues, failures in the PSHE curriculum and vaccine hesitancy. The results from their research went towards creating a set of health recommendations that young people felt should be prioritised for the improved health and wellbeing of young people in Southampton. A Youth Jury was held in July 2024 where the recommendations were refined based on collaboration with the Hampshire and Isle of Wight Integrated Care Partnership. The 12 amended recommendations formed the basis of a manifesto for health which included the following points to be addressed by decision makers: 1.Expand Extra-Curricular Wellness Activities. 2. Improve our methods of handling young people’s mental health by creating accessible services. 3. Respond to Vaping Proactively. 4. Deliver a comprehensive digital health platform for young people. 5.Review the PSHE Curriculum. 6. Encourage the mixed teaching of Sexual and Reproductive Education (SRE) . 7. Cultural & Religious Sensitivity . 8. Information to Parents. 9.Deliver Youth Engagement. 10. Diversify and Expand Work Experience and Financial Support for Prospective Professionals. 11. Establish Panels to Honestly Inform Young People about NHS Careers. 12. Produce Youth- Led Marketing. Evaluation of the effectiveness of the training programme, Youth Jury and Assembly at engaging young people in decision making and the resultant responses from decision makers is still ongoing. Final results will be available from spring 2025. You can see Young People talking about their recommendations here What did we do with this Knowledge? • The recommendations created by the young people within the manifesto for health were presented to the Integrated Care Partnership (ICP) and wider stakeholders in health and wellbeing at the Hampshire and IoW ICP Youth Assembly on 13th November 2024. An action plan was drawn up in collaboration with decision makers to implement the recommendations in practice. These recommendations will go towards informing the delivery of health services for young people In Hampshire and the IoW. • The criteria for a successful youth advocacy/ activism programme provide BiteBack with evidence-based conclusions that they can use to replicate and grow the success of their programmes. The links between youth health and wellbeing and participation in activism programmes was highlighted The findings from this investigation also went towards informing how we run the Young Researcher Training Programme to make sure young people are getting the most out of the experience for their health, wellbeing and future quality of life. See the BiteBack poster image BiteBack poster[83] .png Download PNG • 1.08MB BiteBack visual report (PDF What Next? The learning from this project will go towards informing how future YRTP sessions will be structured and run. For example, the advocacy and links to decision making in this project will be replicated in the next iteration. The next iteration of YRTP begins in December 2025, with a focus on developing a Southampton Youth Voices service. The learnings from BiteBack’s youth activism programme will aid other youth organisations to successfully engage young people in improving their health. This work adds to the growing body of research around the importance of youth participation and its long-term health and wellbeing benefits. Talitha McCleery, 17, took part in the programme and said: "Young people want to and deserve to be, involved in decisions that impact their health and futures. We believe that the people who sit in positions of power must prioritise consulting with young people if they want their decisions to have real change and make a positive impact." Libby Tickner, 17, who also took part, added: "We must all work together - school boards, local government, local charities and national non-governmental organisations - to ensure no opportunity is left wasted." Source: Hampshire youth assembly shares health and wellbeing ideas | Daily Echo