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Talia Emmanuel is a PhD candidate in the Health Workforce & Systems research group at the University of Southampton. < Back What do nurses want? Improving nurses’ shift patterns - where do we start? Talia Emmanuel is a PhD candidate in the Health Workforce & Systems research group at the University of Southampton. Talia Emmanuel is a PhD candidate in the Health Workforce & Systems research group at the University of Southampton. In this blog, she summarises some key results from her recent research paper that explored nurses’ views and values around their shift patterns and working time. Talia Emmanuel -University of Southampton. As a PhD student, one must be well-prepared to answer the question…“What is your research about?”. I typically answer with “I’m trying to find ways of improving shift patterns for nurses when they’re working in hospital”. Enthusiastic nods usually follow, along with a quippy reply: “Wow, that sounds important and complicated ”. Although simply put, “important and complicated” neatly summarises the nuances of this topic. We recognise the significance of improving nurses’ working conditions in the context of persistent health workforce shortages, both nationally and internationally. However, we also realise that singular cure-all solutions are non-existent – there are too many factors at play. So, where do we start? Some of those complicating factors centre around how nurses’ working hours are organised. In hospitals, nurses often have to work in shifts that cover different periods of the 24-hour day. Previous research has identified various repercussions of working shifts (and in particular, working long shifts of 12-hours or more and night shifts): increased burnout , poor work-life balance , and risk of chronic illness and cancer on the long-term. Impacts to nurses’ performance and safety while at work have also been flagged, which pose knock-on effects on the quality of care patients ultimately receive. Despite these risks, shift work is a necessary reality for many nurses working in hospitals. Therefore, administrators and managers are tasked with organising nurses’ shifts into rotas that balance staff wellbeing with service demands and operational costs - and this is no easy feat. Further complications come from recent increased pressure on NHS employers to offer staff more say over their working patterns as a way of improving job satisfaction and their experiences of work. But this raises the question: What do nurses want? More specifically, what shift patterns do they prefer, and why? While there is some existing literature on this (an excellent summary can be found here ), our understanding of the factors that lead nurses to prefer certain shift patterns needs more work. As part of my doctoral research, I was eager to do a deep-dive into this area: I know that in order to find ways to improve nurses’ shift patterns, it is crucial to ask nurses themselves about their views and values around the organisation of their working hours. Fortunately, I had access to a rich data source around this topic: a recent survey study funded by the NIHR ARC Wessex that collected responses from nurses working across the UK and Ireland. My supervisors and I were particularly interested in nurses’ responses when asked: “ If you could choose your shift patterns, what would be the most important factor in that choice?” While we expected nurses to describe many diverse factors/preferences, we were hopeful of commonalities too. Nearly 800 nurses provided their open-ended responses to this question. We analysed all of them and developed 3 overarching themes: Theme 1, “When I want to work ”: Nurses shared many preferences for when they wanted to work, and equally, how they wanted their rest days to be arranged. Even though individual preferences differed, three general scheduling practices were also repeatedly mentioned as helpful: working less ‘harmful’ shift patterns from the start, working more consistent/predictable patterns, and having more flexibility and control over when to work. “Not working consecutive shifts so that I am exhausted by the time I get a day off.” “Know what I am doing each week, either set days or set nights, so I can predict what I am working…” “Having the freedom to give myself more days to recover between weekly shifts.” Theme 2, “Impacts to my life outside work” : Many factors emerged from nurses wanting shift patterns that enable a good work-life balance and minimise disruption to their lives outside work. Their preferences and priorities related to wanting quality recreational time with family and friends, to be able to arrange childcare easily and inexpensively, and having enough rest/recovery time to protect their own wellbeing. “Quality time with my children and family without being permanently drained, exhausted, and sad” “That the pattern could stay the same each week so it would be easier for childcare needs. Many nurseries like set days and when our rota is changing from week to week this can be difficult.” “…Not mixing days and nights in a week […] this does not observe HSE best practice guidelines and messes with the body clock and sleep patterns. It should not be allowed to happen.” Theme 3, “Improving my work environment” : Some nurses mentioned job-specific factors that influenced their choices, like wanting to work the shift patterns they believed to be best for patient care, or, working the best configuration of shifts for optimal take-home pay. But other concepts, like having sufficient staffing numbers and being able to take breaks, were also stressed. “A shift where I feel I have accomplished the care I have wanted to give for my patients” “To not have so much pressure on the shift, with the right amount of staff on and to take my break when needed”. When thinking back to the question “What shift patterns do nurses prefer, and why?”, these themes provide several helpful clues. They also highlight that while there is variation in nurses’ specific shift preferences, there are also more general scheduling practices that also support their priorities. For my research, this finding is particularly striking, as it moves away from the oft-assumption that there are “countless individual preferences that are difficult to accommodate” and toward the idea that there are more universal preferences too. Moreover, when these universal preferences are used during the scheduling process, nurses’ shift patterns can be improved overall. That sounds like a good starting point! Read our full analysis of nurses’ survey responses in the open-access research paper here Follow Talia: Twitter/X | ResearchGate Follow the UoS Health Workforce & Systems team: Twitter/X | UoS website Previous Next

8f830c4b-12f3-482a-9f50-095a9cd14973 ADOPTED: Gambling in the UK: An analysis of data from individuals seeking treatment at the NHS Southern Gambling Service Principal Investigator: Professor Sam Chamberlain, Professor of Psychiatry at University of Soutampton & Honorary Consultant Psychiatrist at Southern Health NHS Foundation Trust. Co-investigators: Professor David Baldwin, University of Southampton, Professor Jon Grant , University of Chicago, Dr Konstantinos Ioannidis, Southern Health NHS Foundation Trust, Dr Mat King, Southern Health NHS Foundation Trust. Partners : University of Southampton & Southern Health NHS Foundation Trust Summary Gambling disorder is a growing problem amongst adult gamblers. Although previous research has identified some of the harms associated with gambling, few studies have documented how these harms in a large, UK clinical sample. Moreover, It is critical to investigate the socioeconomic determinants of gambling disorder via geospatial analyses, bringing together clinical and socio-economic parameters, to identify areas of need and inform the strategic development of the regional service as well as influence policy making more widely. Furthermore, little is known regarding the evolution of factors that predict treatment success dropout or relapse and how individual vulnerabilities interact with environmental risk. This research aims to fill this gap, by analysing a large existing dataset of treatment seeking gamblers. The service has a purpose to provide clinical excellence, while adopting innovative methods (digital pre-assessment, digital monitoring, virtual individual and group therapies etc.) in the clinical setting and to spearhead cutting-edge research which will inform and enhance clinical practice locally, nationally, and globally. The long-term goal of the service is to establish a world-renowned centre that minimises gambling harms through comprehensive evidence-based treatments, research, outreach, and prevention (including early interventions). The clinical focus of the Southern Gambling Service (SGS) is on minimising gambling harms, which involves treating disordered gambling using evidence-based approaches, as well as providing support aimed to promote or replenish recovery capital in individuals (e.g. detecting comorbidities and signposting individuals to other sources of support, enhance social connectedness, promote liaison with sources of financial, social and wellbeing support, setting out the scaffolding of follow up arrangements).

Health Inequality The aim of this National Priority Consortium in Health and Care Inequalities is to work across all Applied Research Collaborations (ARCs), the Northern Health Science Alliance (NHSA) and with national stakeholders to support the health and care system nationally and across our regions, to reduce health care inequalities. The programme is led by the NIHR ARC North East and North Cumbria and the NIHR ARC Yorkshire and Humber, and involves all 15 ARCs from across the country Who is participating? The cross-sector implementation of NICE-recommended CBT-based interventions for young people in care: Framework development and pilot of trauma-focused CBT. (Involving ARC West, ARC East of England, ARC North East and North Cumbria, ARC Wessex, ARC Yorkshire and Humber, and co-funded with the Child Health and Maternity Consortium

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

National Festival of Applied Dementia Research During Dementia Action week | 19 - 25 May 2025 we are celebrating the work of applied dementia researchers from across England. Find and event near you. Browse our DEMFEST Events Download all the events in this printable brochure > Dementia Research Festival events from around England Filter by Region Select Region Join in the conversation online - just look out for the #DEMFEST tag for pictures and news on our events SUPPORT THAT MATTERS: PREVIEW a Dementia Art & Research Exhibition May 8, 2025 5.30-7.30pm (opening night) Skyway Gallery, 2 Pond Road, Shoreham-by-sea BN43 5WU Exhibition: 9 – 15 May 2025 10am – 4pm - Wheelchair accessible Do you want to help improve care and support for people with memory problems and dementia – but don’t know where to start? May 17, 2025 1.00pm-2.00pm New Art Exchange, 39 Gregory Boulevard, Nottingham NG7 6BE Also runs Tuesday 20th May 1.00pm-2.00pm - Just drop in Dementia Community Research Network (DCRN) Public Conference May 19, 2025 2.00pm-4.30pm Stanstead Lodge 260 Stanstead Road SE23 1DD https://www.eventbrite.co.uk/e/dementia-community-research-conference-tickets-1255488202009 Dementia Care Research: What’s that all about then? May 19, 2025 Runs from 19-25 May Online Find out more: https://arc-swp.nihr.ac.uk/news/ Day 1 of our Mental Stimulation & Social Engagement event (Afternoon Tea) May 19, 2025 2.00-4.30pm Fulham Pier at Fulham Football Stadium, Stevenage Road, London SW6 6HH p.nair@imperial.ac.uk Day 2 of our Mental Stimulation & Social Engagement event (Virtual Reality) May 20, 2025 10:30am to 1:00pm Danehust Centre, Brentford TW8 8HX p.nair@imperial.ac.uk SUPPORT THAT MATTERS: a Dementia Art & Research Exhibition May 20, 2025 5.00pm-8.00pm (opening night) Creative Space Art Gallery, 1 Red Lion Lane, Whitstable CT5 1FG Runs 21 – 26 May 2025 10.00am - 6.00pm Drop in, no booking needed Dementia Action Week – Dementia Research and Me May 20, 2025 12.00-4.00pm The Royal Hotel, Weston-super-Mare, BS23 1JP Contact: katie.breheny@bristol.ac.uk Link: https://arc-w.nihr.ac.uk/events/dementia-action-week-dementia-research-and-me/ What is happening in dementia research in the West Midlands? May 20, 2025 12.45pm-4.00pm Stoke-on-Trent Film Theatre, Wade Centre, Hartshill Road. ST4 7NY Link: https://www.arc-wm.nihr.ac.uk/news-events/ Day 3 of our Physical Activity & Social Engagement event (Yoga) May 21, 2025 10:30- 1:00pm London Care, 42 Westbourne Park Road, W2 5PH p.nair@imperial.ac.uk Workshop | How do we foster dementia-friendly communities? May 21, 2025 10:00-12:00pm Stevenage Arts & Leisure Centre, Lytton Way, Stevenage SG1 1LZ Contact: g.windle@herts.ac.uk for venue details. Dementia research in the North East – how can it help me? May 21, 2025 11.30am-1.00pm Newcastle United Foundation, Diana Street, Newcastle upon Tyne, NE4 68Q To book this event contact marie.poole@newcastle.ac.uk Chai and Chat: South Asian Dementia Cafe May 22, 2025 1pm-3pm Mary Sunley House, Banstead Street West, Leeds, LS8 5RU Contact: A.Akhtar46@bradford.ac.uk Dementia Knowledge Exchange Event in the South Asian Community May 22, 2025 12.00-1.00pm TBC Manchester Liverpool Contact: sarah.smith-10@manchester.ac.uk Seeing Dementia Differently: A Journey Through Research & Lived Experience May 22, 2025 2.00pm-5.00pm St Pancras & Somers Town Living Centre, 2 Ossulston Street, London NW1 1DF Contact on the day: Jess Wright (jess.wright@ucl.ac.uk) Dementia Tea Dance: Connecting Communities, Sharing Knowledge May 22, 2025 1.00pm-3.00pm The Old School House (TOSH) Gladstone Mews, Bournemouth. BH7 6BG Call Pippa 07780 004101 Day 4 of our Healthy Diet event May 22, 2025 10:30am to 1:00pm Loveday Kensington, 2 Kensington Square, London W8 5EP p.nair@imperial.ac.uk Let’s Talk: 3D May 23, 2025 10-12pm Cloth Hall Court, Quebec Street Leeds LS1 2HA http://s.raman@leeds.ac.uk Life in Embrace – Navigating the realities of dementia in the UK and India May 23, 2025 2.00pm - 4.00pm Reading Biscuit Factory Unit 1A, Queen’s Walk (Corner of Oxford Road), Reading RG1 7QE https://www.readingbiscuitfactory.co.uk/ Day 5 of our Community Health Checks May 23, 2025 1:00- 4:00pm Kensington Town Hall, Hornton St, London W8 7NX p.nair@imperial.ac.uk SUPPORT THAT MATTERS +: a VIRTUAL Dementia Art & Research Exhibition May 23, 2025 12.00-1.00pm Online http://Register: https://tinyurl.com/supportthatmatters Brain Health & Dementia Prevention in the Black African Community May 25, 2025 5pm-8pm Blackburn Hall, Commercial Street Rothwell, Leeds. LS26 0AW Contact: e.s.nwofe@bradford.ac.uk

98ea6e39-72b8-439c-baa8-0843050c271b ADOPTED: SPLENDID Social Prescribing for people to Live ENjoyably with Dementia/memory problems In Daily life Research lead: Professor George Christopher Fox, University of East Anglia ARC Wessex team: Dr Euan Sadler, University of Southampton, Dr Katherine Bradbury, University of Southampton. Partner organisations: NHS Norfolk and Waveney CCG, University of Hull, University of Nottingham, University of Exeter, King's College London, University of Newcastle upon Tyne, Meaningful Measures Ltd. Start: 01/05/2022 End: 30/04/2027 What is the problem? Nearly one million people in the UK will be living with the affects of dementia by 2030 including poor well-being and quality of life. Social prescribing is a prescription of activities for a person to use to link with others and undertake something they might enjoy, this could be a walking or singing group, flower arranging class, visit to a museum or putting them in touch with other people to help them feel better. People meet with staff called Link- Workers, who have a conversation with them to help them think about what they enjoy and might help. The Link Worker might then introduce them to a group or activity or support them to find information to make links. Family members can be involved too. Research shows social prescribing has better effects than just taking medicine and is happening more often. This study (called SPLENDID) aims to understand how we ensure social prescribing is useful and helpful to people with dementia. What we will do SPLENDID researchers will talk with people with dementia, family carers and staff working in social prescribing to understand what people want, what works well and what could be improved. We will use this to design, with people with dementia, what looks like the best way for social prescribing with people with dementia. We will create some tools (online and face-to-face) to help workers and people with dementia talk and think together about what might help them. We will test it with a small group of people to see if it helps and look at what training Link- Workers need to offer the best support for people with dementia and their families. We then decide if this should be taken forward and tested in a larger study to see if it improves peoples’ well-being and is value for money. Working with patients and carers Our team met 8 people with dementia and 8 family carers to design this study. We have 2 co-researchers (Mr Rook and Mrs Bingham) who are living with dementia. 150 people with dementia were surveyed to see what social prescribing is currently being offered and found people were doing a range of outdoor and indoor activities, some with family which they enjoyed and found helpful. People with dementia and carers will be on our Committees, and several dementia charities support this work. Dissemination Our website will offer free resources put together with people with dementia and carers. Our findings will be shared locally and nationally using links we have with universities, clinical experts, press, social media, workshops with people who commission and provide. NIHR ARC East of England study site Publications Social prescribing for people living with dementia (PLWD) and their carers: what works, for whom, under what circumstances and why – protocol for a complex intervention systematic review | BMJ Open

ARC Wessex Faculty Membership Wessex is home to some of this England’s most successful research organisations and the Applied Research Collaboration (ARC) hosts some of the most experienced and talented applied health researchers available. Many of them have international reputations in their chosen field. One of the ARCs key objectives is to increase applied research capacity in health and care organisations. The establishment of ARC Wessex Faculty provides an opportunity for research expertise and skills to be shared from right across the entire region. Becoming an ARC Wessex Faculty member brings substantial benefits. Members, whatever stage their career has reached, will be able to access a wide range of resources aimed at enhancing the quality, reach and impact of their research and evidence translation activities. What is ARC Wessex Faculty Membership? As a member of the Faculty you are there to support, encourage and be involved in our programme of research. You can become involved in our research projects, support and mentor researchers and use your skills to help in the growth and success of ARC Wessex. Normally you would be working with or in one of our partner organisations including an NHS or local authority (public health and social care), or at one of our partner Universities (Portsmouth, Southampton, Winchester and Bournemouth). You should also have an interest or connection to one of our four research areas (ageing & dementia, healthy communities, long term conditions and workforce and health systems) If you would like to support us as a member of the public, patient or carer then see our Get Involved pages Why become a Faculty Member? As a member of ARC Wessex Faculty, you have access to a wide range of opportunities and resources available through ARC Wessex. Support will be determined on a case-by-case basis and subject to available internal capacity and funding, and alignment with our strategy. Our skills and resources could include: Affiliation with ARC Wessex projects, for example as a member of a project team, steering group or interested stakeholder, supporting the dissemination, adoption and spread of research findings Support to disseminate and promote your research outputs. This may be in conjunction with the Wessex Academic Health Science Network (https://wessexahs n.org.uk/ ) Access to our training, learning and development events and activities Opportunity to apply for ARC Wessex applied health research funding Contribute to peer review of ARC Wessex research protocols Opportunity to be linked to relevant programmes of work hosted by other ARCs Advance notice of both ARC Wessex and the 14 other ARCs events and activities, in particular those related to funding and training opportunities Opportunity to contribute to activities designed to build capacity and capability in our health and care research workforce across Wessex Opportunity to contribute to stakeholder events, influencing the future direction of our research and implementation programme What you can cont ribute Be an enthusiastic ambassador for ARC Wessex Where appropriate, support other ARC Faculty members' work Provide knowledge, advice or opportunities for ARC trainees Implementation Support for ARC projects Your knowledge and experience Apply to become a Member To apply, download the form here (all applications must be accompanied by a short CV). You will receive no tification of the outcome of your application within 10 working days. Email the form and your CV to us here once complete.

26c4cdf6-472a-4d3e-94e8-fa2c11941202 COMPLETED: Neuro Digital: From Attitudes to Strategies Principal Investigator: Professor Chris Kipps Team members: Dr Sarah Fearn, Dr John Spreadbury, Dr Rachel Chappell, Dr Corine Driessens Project Partners: University Hospital Southampton NHS Foundation Trust, University of Southampton Starts: 01 October 2021 Ends: 30 September 2023 Background The COVID-19 pandemic has changed the way neurological care is delivered to involve greater use of digital technology such as videocalls, smartphone apps or online platforms. University Hospital Southampton (UHS) has been developing its own electronic personal health record and self-management platform called My Medical Record. This online care platform offers patients more control over their healthcare by allowing them to: access their clinical letters and appointments in one place message their clinical teams for advice read relevant information on their condition monitor and share outcomes. Data from the platform, however, indicates differences in uptake and use amongst different groups of patients and healthcare professionals. Existing research also tell us that there are still important issues to understand around the uptake and use of digital technology in neurological care and long-term conditions more generally. Aims and Methodology The main aim of the research is to understand how to optimise the use of digital health technology in neurological conditions ( multiple sclerosis, Parkinson’s disease or Atypical Parkinsonian Syndrome (APS), headache, epilepsy, motor neurone disease or other neuromuscular disorder, Huntington’s disease, atypical or early onset dementia ). This will include how to optimise the use of My Medical Record for patients at UHS. The research will involve three interrelated pieces of work or ‘work packages’: Work Package 1 will use interviews and focus groups with neurological patients, carers, and healthcare professionals to investigate attitudes toward digital health technology and My Medical Record. Work Package 2 will use surveys with neurological patients to investigate relationships between personal and clinical characteristics and how people use digital health and My Medical Record. Work Package 3 will use the findings from Work Package 1 and 2 to produce some strategies to support people with neurological conditions to use digital health and My Medical Record. The strategies will be produced together with patient, carer, and healthcare professional groups in co-production workshops. Outcomes The NHS has highlighted the greater use of digital health technology as a way to improve the delivery of care over the next 10 years. The findings from the research will help us to better understand how to promote, optimise and support the use of digital health for people with neurological conditions, including the use of My Medical Record. Taking Part If you would like more information about the study or are interested in taking part, please contact Dr Sarah Fearn via email at S.Fearn@soton.ac.uk or Dr John Spreadbury on 07876818404 or jhs101@soton.ac.uk . What did we find out? With regards to personal characteristics affecting use: We found that older age, lower education, lower income, lower literacy and lower patient activation* were all associated with lower digital health technology uptake and use and more negative views. * Patient activation is a person's level of knowledge, skills and confidence to manage their condition(s) We found that gender and health status were not associated with uptake, use* or views. * Exception of health status and direct contact with healthcare team when participant has a specific issue Whilst we found that symptoms associated with having a neurological condition impacted the use of digital healthcare, we found that people with a neurological condition had access to digital healthcare (e.g. the tech / internet connection etc) comparable to the general population. We also held three co-production workshops to identify strategies that could support or promote the use of digital health technology amongst people with neurological condition. • These were the suggested strategies: What difference can this new knowledge make? Understanding the attitudes towards, and use of, digital health technology for people living with neurological conditions, their carers and their HCPs allows us to identify areas where more support might help promote and improve use. Identifying personal and health characteristics associated with more negative views and / or lower rates of use can help us to identify those more likely to need, or benefit from, additional support. Co-designing strategies to help support and promote the use of digital health technology for people living with neurological conditions, their carers and their HCPs, allows us to create support mechanisms that have been co-developed with the users themselves. Why is this important? The number of people with a neurological condition is rising, with around 17 million cases in the UK. Approximately 4% of NHS funding goes to neurology care. The use of digital health technology offers an opportunity The NHS Long Term Plan highlights the use of digital mechanisms as key enablers to improve NHS care delivery over the next 10 years. The use of digital health technology has the potential to help reduce variation or inequality in care, make care more integrated or joined up, identify people at higher risk of poorer outcomes, and promote self-management. It can also support clinicians to be more efficient, freeing up time for the sickest patients. Identifying factors that promote self-management and well-being could improve patient diagnosis and quality of life, reducing care requirements from the NHS. Reducing unplanned GP and hospital visits could improve patient quality of life and reduce resources spent by the NHS. Identifying the frequency and impact of fatigue and ways to manage it could improve patient and reduce resources spent by the NHS. Our findings can help to improve support to people with neurological conditions to use digital health technology. It can do this by: Understanding the benefits and challenges of use Identifying those most likely to need or benefit from additional support Co-developing implementable strategies to support or promote use What Next? We will be using the findings from this study to: -Publish academic publications -Present at medical conferences -Present to groups of people with neurological conditions -Present to national support organisations -Present to ICB (digital transformation work programme); UHS (IT); Neurological Alliance -Inform the Optimising Outpatients project, which aims to create recommendations for the use of remote care in neurology outpatient services. We are continuing to analyse the data and disseminate findings to a wide audience.

35fc5ade-22b2-4685-9329-21c42b28a888 COMPLETED: Testing the living with chronic illness scale Validation of the living with chronic illness scale in an English-speaking population with Long-term conditions Principal Investigator: Professor Mari-Carmen Portillo (Professor of Long-Term Conditions. School of Health Sciences. University of Southampton) Team members: Dr Kelly Hislop-Lennie (Principal Investigator). Senior Lecturer in Adult Nursing. University of Bournemouth. Dr Leire Ambrosio. Senior Research Fellow. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton. Ms Hannah Barker. PhD student at the School of Geography, University of Southampton. Dr David Culliford. Principal Research Fellow and Senior Medical Statistician. School of Health Sciences, University of Southampton. Dr Emily Arden-Close. Principal Academic in the Department of Psychology, Bournemouth University. Dr Jo Hope. Lecturer. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton. Dr James Bennet. Primary Care Research Locality Lead, Clinical Research Network Wessex. Dr Simon Fraser. Associate Professor of Public Health. University of Southampton Dr Corine Driessens. Senior Research Fellow in Statistics. NIHR Applied Research Collaboration Wessex, University of Southampton. Dr Nestor Serrano-Fuentes. Senior Research Fellow. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton. Start: 1 October 2019 Ends: 30 September 2021 Project Partners: Clinical Research Network (CRN) Wessex, Primary Care Dorset, Bournemouth University, University Hospital Southampton NHS Foundation Trust NHS: Alresford Surgery. Alresford, Angel Hill Surgery. Bury St. Edmunds, Banbury Cross Health Centre. Oxfordshire, Buchanan Road Surgery. Sheffield, Buttercross Health Centre. Somerton, Glastonbury Health Centre. Glastonbury, Heeley Green Surgery. Sheffield, Ixworth Surgery. Ixworth, Newquay Health Centre. Newquay, Oaks Healthcare. Waterlooville, Park Road Surgery. Teddington, Rosedale Surgery. Lowestoft, Shreeji Medical Centre. Slough, Swanage Health Centre. Swanage, The Park Medical Practice. Shepton Mallet, Trafalgar Medical Group Practice. Portsmouth, Wareham Surgery. Wareham, White Horse Medical Practice. Faringdon. Charity Partners: Parkinson’s UK , Diabetes UK and Asthma UK What did we find out? The scale successfully measures individuals’ experiences of living with one or more long-term conditions We found that the scale was acceptable to 577 people from the United Kingdom living with different long-term conditions. The results recommend shortening the original version of the scale for better use in clinical practice. What difference can this new knowledge make? The scale does not focus on the disease but on how the person lives with the disease; therefore, identifying physical, emotional, spiritual, and social complex needs and what is meaningful and relevant to people. Utilising the scale as an assessment and diagnostic tool in primary care could result in better health care. For example, it could support the development of more comprehensive and individualised care plans, a more effective and directed referral to specialists and community support groups, and regular monitoring. Its use could bridge health and social care services, developing and evaluating care pathways based on the commonalities across conditions (not medical diagnosis), and improving patient experience. Why is this important? This work has led to a new understanding of key elements that health and social care interventions must address to improve the lives of people living with long-term conditions. It highlights the need to focus on capturing the things that matter to people living with one or more long-term conditions in the UK. What next? The next step is to carry out a feasibility implementation study of the scale in clinical practice, particularly for people living with type 2 diabetes. The use of this scale in clinical practice has the potential to improve the daily lives of people with multiple conditions, improving their quality of life and well-being. It can also help improve referral processes and coordinate care. Outputs from research: Ambrosio, L., Hislop-Lennie, K., Serrano-Fuentes, N., Driessens, C., & Portillo, M. C. (2023). First validation study of the living with long term conditions scale (LwLTCs) among English-speaking population living with Parkinson's disease. Health and quality of life outcomes, 21(1), 69. https://doi.org/10.1186/s12955-023-02154-6 Ambrosio, L., Hislop-Lennie, K., Barker, H., Culliford, D., & Portillo, M. C. (2021). Living with Long term condition Scale: A pilot validation study of a new person centred tool in the UK. Nursing open, 8(4), 1909–1919. https://doi.org/10.1002/nop2.859 Ambrosio L, Navarta-Sánchez MV, Portillo MC, Martin-Lanas R, Recio M, Riverol M. Psychosocial Adjustment to Illness Scale in family caregivers of patients with Parkinson's Disease: Spanish validation study. Health Soc Care Community. 2021 Jul;29(4):1030-1040. https://doi.org/10.1111/hsc.13137 Ambrosio L, Hislop-Lennie K, Serrano-Fuentes N, Driessens C, Portillo MC. Psychometric properties of the living with long term conditions scale in an English-speaking population living with long term conditions in the UK. BMJ Open. 2024 Jan 10;14(1):e077978. https://doi.org/10.1136/bmjopen-2023-077978 Background and origina lay summary Long term conditions (LTCs) are a worldwide challenge because of their complications, increasing numbers, costs and impact on people’s lives. In order to develop interventions that improve the adaptation to illness and quality of life, we need appropriate, reliable and valid tools, which reflect cultural and language diversities and individual needs. This would benefit both patients and health/social care professionals in the management of LTC, by allowing the patients a way to express their needs and therefore, allow the health/social care professional to direct the patient to specific, relevant resources. The present study aims to produce an English version of the Living with Chronic Illness Scale and establish if it can be useful and applicable to English speaking people with LTCs in the UK. The Living with Chronic Illness Scale is the only available tool, which comprehensively evaluates the experience of living with a long-term condition, focusing on the person and not on the disease. This scale was created after previous research, and successfully used with people with Parkinson’s Disease from Spain and South America, in Spanish. In this study we will first translate the Spanish version of the scale into English, making any necessary cultural changes. After this, we will test the understanding of the approved English version with 15 people with LTCs. Then, we will use the final English version of the scale with at least 1,650 people with different LTCs in community settings from Wessex. Apart from the Living with Chronic Illness Scale, we will ask participants about perceived social support, life satisfaction, quality of life, and the perceived severity of their LTC(s), using tools for English speakers. Finally, 2 discussion groups will take place with people with LTC, 2 with family-carers and 2 with health professionals to explore and compare their views about the usefulness of this scale in the daily management of LTC. People with long-term conditions and associations have contributed to the choice of topic, research and dissemination plan.

9cf70c4f-6d1c-4acf-8a29-5aa00565f951 ADOPTED (PhD): PREPARE-to-ACT study: Preparing for and Responding to Emergencies – A multi-phased qualitative investigation of Patients’ And members of their RElational networks’ decisions to use urgent and emergency care during Anti-Cancer Treatment Principal Investigator: John Defty, University Hospital Southampton NHS Foundation Trust Start: September 2022 Ends: September 2026 Background Complications of anti-cancer treatment can be life threatening . Anti-cancer treatments, including chemotherapy, radiotherapy, and immunotherapy, are increasingly provided on a day-case basis , meaning that complications occur at home and necessitate a response from urgent and emergency care services . Evidence suggests people receiving anti-cancer treatment delay seeking help despite access to dedicated emergency care (acute oncology services) . Focus of research to date has been for what reasons and when , rather than how and why, people with cancer use these services. Evidence suggests patients and informal carers rely on prior instructions from cancer specialists to identify and interpret the severity of complications but find relating to this information difficult when acutely unwell . Emergency ‘contingency planning’ was identified as a priority for improving the safety of anti-cancer treatment but, there are few studies that describe how pre-treatment emergency planning influences help-seeking for complications of anti-cancer treatment . With the number of people eligible for anti-cancer treatment expected to rise by two million by 2040, the need for research is now urgent. Results from our scoping review (completed; drafted for publication) suggest preparing for and making sense of urgent and emergency care is hard work for people with cancer. It also revealed poor understanding of how this work might differ for people receiving different types of treatment. This study aims to address these gaps by answering the question: ‘How do patients and informal carers prepare and seek help for complications of different anti-cancer treatments?’

0be5d40d-fcbc-4b27-971a-75e1967ce33d COMPLETED: Development of a core outcome set for nurse wellbeing: a Delphi study Lead applicant: Dr Gemma Simons Co-applicants: Prof Jane Ball , Prof David Baldwin , Dr Emma Wadey, Dr Catherine Smith Participant Information Sheet : Download here Project Summary: Read project summary document (short summary) Read project summary document (long summary) Background : Little attention has been paid to the work lives and wellbeing of the nursing workforce, despite it being a priority area. Currently, there is no consensus on what wellbeing is or how it should be measured. An evidence-based, positive way of measuring wellbeing is through a Core Outcome Set. What is a Core Outcome Set? Outcomes are used to measure whether a strategy, intervention or action has had the required result. There are often multiple outcomes and ways of measuring them, which makes comparison difficult. A Core Outcome Set is an agreed, or consensus, set of outcomes and measurement tools that, when used, provide consistent and comprehensive focus as everyone is measuring and reporting the same outcomes in the same way. Aim: This project aims to develop a Core Outcome Set for Nurse Wellbeing. Objectives: Produce a list of potential wellbeing outcomes and help text to describe them in that are clear and meaningful for nurses [PPI panel] Develop a consensus between nurses and nurse wellbeing experts on a core outcome set for nurse wellbeing [Delphi Study] Identify and assess for quality measurement instruments for the core outcome set for nurse wellbeing identified by the Delphi study [Critical Literature Review] Select measurement tools for the identified core outcome set and agree on a final Core Outcome Set for Nurse Wellbeing [PPI panel and Study Advisory Group]. Implications and Impact: A Core Outcome Set for Nurse Wellbeing developed by nursing and nurse wellbeing experts will provide researchers and those undertaking governance with evidence-based and meaningful tools with which to evaluate wellbeing interventions. This study is registered on the Core Outcome Measures in Effectiveness Trials (COMET Initiative) database https://www.comet-initiative.org/Studies/Details/2433 Publiations The Mental Health of Medical Students: Supporting Wellbeing in Medical Education | Oxford Academic ( oup.com ) https://doi.org/10.1002/wps.21177

a0531f94-b063-4041-908b-5830a10b5f66 ADOPTED: Community pharmacy alcohol-related liver disease risk identification and linkage to care through development of a complex intervention (CIP-LINC) Prinicpal Investigator: Dr Alexander Smith Start Date: 16 February 2023 End Date: 31 March 2025 Background Liver scarring (known as cirrhosis) is a frequent and ever more common reason for dying in the United Kingdom (UK). The most common cause of liver scarring in the UK is alcohol. Death from liver scarring can be prevented if liver disease is found at an early stage. This can be hard because many people with liver scarring do not look or feel unwell until they develop liver failure. At this stage it is too late to prevent complications. Alcohol-related liver disease can be found earlier by assessing for it in people who drink too much alcohol. This is advised in national guidelines. Local pharmacists are one of the most accessible health professionals. There are over 12000 local pharmacies in England. Lots of these pharmacies are in areas where more people have alcohol problems. Local pharmacists are able to identify people who drink too much alcohol and provide them support to drink less. However, it is not known if local pharmacists can get these people assessed for alcohol-related liver disease. This study looks at how this could be done with the aim of creating a Toolkit to make it happen.