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Role of patient-assessed functioning as a predictor of health service use in patients with long term mental health conditions Lead applicants: Prof David Baldwin, Prof Mari Carmen Portillo Co-applicants: Dr Leire Ambrosio, Dr Bethan Impey Project Summary: Read a long summary Read a short summary Treatments for patients with long term medical conditions are often disappointing in their effectiveness and acceptability in clinical practice. This is perhaps because they tend to be targeted at reducing troublesome symptoms rather than directed at improving everyday functioning. We have previously shown that self-assessed functioning (using a self-report scale known as the PARADISE-24) was a better predictor of health service use than is anxiety and depressive symptom severity, among a group of patients attending a Mood Disorders Service in Southampton. That research was undertaken with patients with a primary diagnosis of an anxiety or depressive disorder, and we are now interested in conducting a similar study of functioning in patients with other long-term health conditions in which anxiety and depressive symptoms are common, to understand if functioning will also be a useful predictor of health service use in these conditions. Hearing function is not one of the measures included within PARADISE-24, however, hearing loss is associated with increased likelihood of anxiety and depression and increased use of health services and our PPIE representatives highlighted sensory function as an important measure. We will therefore also include a self-report measure of hearing difficulties as well as some further questions about hearing function to see whether they also are useful in predicting use of health services in our cohorts. The long-term conditions we are going to study are gambling disorder, alcohol use disorder, ‘long-covid’ and hearing loss (those attending the University of Southampton Auditory Implant Service, USAIS). We have chosen these populations since anxiety and depression are common in all of them, and because these populations are available to us (large convenience samples). These groups would have a variety of functional symptoms: for example, memory problems might be more likely in those with alcohol use disorder, attention deficit might be common in those with gambling disorder, sleep and energy problems common in those rehabilitating after Covid-19, and independence might be relevant for those with hearing loss in later life (in addition to the hearing loss itself). Participation in the research should not be too onerous for patients. Clinical diagnoses will be identified from the medical records, and participants will report the severity of anxiety and depressive symptoms and other symptoms associated with the condition and whether they have hearing difficulties and will report on their everyday functioning using the PARADISE-24 scale at Baseline. They will be followed-up twice (at three and six months after the Baseline assessment), with further queries relating to symptom severity and functioning. The use of health services will be ascertained by self-report and through inspection of electronic health records. The findings from this study could influence clinical practice. It should help to better understand the burden of illness and could ascertain the relative importance of symptom severity and degree of functioning in predicting health service use by groups of patients with a range of long-term conditions. It could therefore result in more targeted delivery of health and social care interventions, to both improve the patient’s quality of life and reduce their need for health service use. It would also contribute to addressing the objectives of the National Institute of Health Research Applied Research Collaborative Mental Health Infrastructure programme.

Case studies: Anna Badley It doesn't matter where you start. Find your research journey - there’s more than one path I love research and I always have done, but my journey to being awarded an ARC Wessex PhD Scholarship has been far from traditional. I have always been passionate about the nursing profession and in particular nurses and others who provide care in a person’s home. As a very busy District Nurse and Community Matron I had always assumed that research would be something I did later in my career. An incident at work left me severely unwell. This incident not only changed my life, it made me want to help others and learn about work pressure and how this impacts well-being and mental health. I moved into a Research Nurse position which was invaluable, it opened my eyes in seeing how research works in the NHS from research design to recruitment and data collection. It also gave me a great understanding of research governance and ethics. At the same time, I began work on my Master’s dissertation. I was fortunate enough to work with Professor Jane Ball, a globally renowned nursing researcher who became my supervisor. The MSc Dissertation allowed me to experience conducting my own research whilst developing skills in academic research. For anyone thinking of getting into research I would say go for it! Research is rich, rewarding and exciting. It doesn’t matter where you are starting from, there are so many opportunities available. It is easy to think that research or doing a PhD is an individual activity, I have learnt from my journey that it is only possible as a team - without the generosity of time, knowledge and leadership from Professor Jane Bal l, University of Southampton and Dr Sarah Williams , Solent NHS Trust this research would not be possible and I hope that together we can learn how to prevent nurses and others from getting harmed by doing a job that they love. Top tips Get in touch with your Research and Development team - they are a great source of knowledge about opportunities and how to start your research journey If you can, I would really encourage people to get experience in NHS Research Delivery, Internships are a good way of getting this experience Connect with people - research is only achieved in a team Find your research journey - there’s more than one path

ADOPTED: SORT-IT (Salisbury Operational Research Track – Improving Together) SORT-IT is an exciting programme of collaborative research exploring how operational research can drive improvements in peri-operative management at a time of significant challenges for the NHS. These include limited resources, increasing demand and workforce fatigue, and urgently require us to think creatively and collaboratively. The wider SORT-IT programme is a joint endeavour led equally by Professor Christine Currie (CC: UoS) and Dr Alexandra Hogan (AH) BA(Hons), PhD, MBBS, FRCA, Consultant Anaesthetist at SHFT / Academic affiliation – UCL Great Ormond Street Institute of Child Health. It is a novel programme of collaborative research with potential for clinical implementation under the SHFT strategic aim of ‘Improving Together’. In this proposal, working with SHFT, we are seeking funding for a seed project to develop the understanding and documentation needed to apply for external funding for the wider programme (target - NIHR RfPB). We will investigate two specific steps along the peri-operative pathway. 1. ‘Booking’ of a patient (processing of the patient’s referral for surgery and setting the course of their perioperative care). 2. Recovery (optimising patient preparation for their step-down from Theatres). SHFT serves approximately 270,000 people, of whom 12,500 underwent elective surgical procedures in 2019/20. Similar to many Trusts post-pandemic, only 70.2% of patients met the referral-to-treatment waiting time target of 18-weeks. The NHS is challenged by rising waiting lists, a trajectory established pre-pandemic (2012-2019) that is now accelerating. Consequently, the Government’s target of 92% of patients achieving ≤ 18-weeks to starting consultant-led treatment has not been met since 2016 (NHS Key Statistics, July 2023).

Long Term Conditions publications Trajectories of functional limitations, health-related quality of life and societal costs in individuals with long COVID: a population-based longitudinal cohort study Wang J, Goodfellow H, Walker S, Blandford A, Pfeffer P, Hurst JR, Sunkersing D, Bradbury K, Robson C, Henley W, Gomes M Long COVID, as defined by the National Institute for Health and Care Excellence, refers to the persistence of symptoms lasting for at least 12 weeks following COVID-19 infection. It has been suggested that at least 1 in 10 patients who had COVID-19 experiences long COVID symptoms. By March 2024 (latest figures made available by the Office for National Statistics), an estimated 2 million people in the UK (3.3% of the population) reported experiencing symptoms consistent with long COVID. These symptoms have a particularly significant impact on the working-age population, leading to both absenteeism (productivity loss due to time off work) and presenteeism (lower productivity due to illness while working). It has been estimated that these productivity losses amounted to £5.7 billion in the UK between 2022 and 2023. This paper reports on the trajectories of functional limitations, fatigue, health-related quality of life (HRQL) and societal costs within the first 6 months after registration in the Living With Covid Recovery programme. In addition, we investigate whether these trajectories differ according to patient characteristics or the extent of the individuals’ participation in the LWCR programme. https://doi.org/10.1136/bmjopen-2024-088538 November 2024 Long Term Conditions, COVID-19 Subthalamic Stimulation Improves Short-Term Satisfaction with Life and Treatment in Parkinson's Disease Sauerbier A, Bachon P, Ambrosio L, Loehrer PA, Rizos A, Jost ST, Gronostay A, Fink GR, Ashkan K, Nimsky C, Visser-Vandewalle V, Chaudhuri KR, Timmermann L, Martinez-Martin P, Dafsari HS; EUROPAR, the Non-Motor Parkinson’s Disease Research Group and the German Parkinson Society Non-Motor Symptoms Study Group The effect of subthalamic stimulation (STN-DBS) on patients' personal satisfaction with life and their Parkinson's disease (PD) treatment is understudied, as is its correlation with quality of life (QoL). Therefore, we tested the hypothesis that STN-DBS for PD enhances satisfaction with life and treatment. In a prospective, multicenter study with a 6-month follow-up involving 121 patients, we measured the main outcomes using the Satisfaction with Life and Treatment Scale (SLTS-7) https://doi.org/10.3390/jpm14101023 October 2024 Long Term Conditions Are people living with Huntington's disease experiencing person-centered integrated care? Bartolomeu-pires S, Kunkel D, Goodwin N, Dace S, Culliford D, Kipps C Huntington's disease (HD) is among the most complex long-term neurological conditions, necessitating care and management from multiple partners within and beyond the health sector. However, there is a paucity of evidence describing how individuals receive this multifaceted care and whether current care provision adequately meets their needs. Our objective was to understand if current care provision is meeting the complex needs of people living with HD in England and assess their perceived need for integrated care. https://doi.org/10.1177/18796397241288449 October 2024 Long Term Conditions Marín-Maicas P, Ambrosio L, Corchon S, González-Moreno J, Portillo MC Living with long-term conditions: validation of a new instrument for family caregivers in a Spanish-speaking population Optimising the management of chronicity has been a global challenge for decades. Individuals with long-term conditions (LTCs) and their families live with them for years. Thus, it is necessary to include both of their perspectives in the management and adaptation of the interventions proposed. The psychometric properties of the living with LTCs scale from the perspective of the family caregiver are unknown. The objective of the present study is to describe the psychometric properties of the EC-PC-Fam in a Spanish-speaking population. https://doi.org/10.1136/bmjopen-2024-088773 September 2024 Long Term Conditions Care for sexual health in oncology survey: Discussions about sexual health with people with cancer in the context of the obligation to provide informed consent Sheppard S, Culliford D, Glen T, Lee S, Sheppard ZA, Porter S The purpose of this paper is to describe the impacts of cancer treatment on sexual health in a sample of people who had been treated for mixed types of cancer; to describe discussions they had with professionals about sexual health that occurred during cancer care; and to consider the extent to which these discussions were sufficient to enable participants to give informed consent for the sexual side effect of cancer treatment. https://doi.org/10.1016/j.ejon.2024.102669 August 2024 Long Term Conditions What services are currently provided to people with HFpEF in the UK and what are their components? A protocol for a scoping literature review Forsyth F, Deaton C, Kalra PR, Green M, Harrison ME, Tavares S, Dirksen A, Kuhn I, Farquharson B, Austin RC Heart failure with preserved ejection fraction (HFpEF) is increasing in incidence and is increasingly the most common heart failure (HF) diagnosis. Patients with HFpEF are often excluded from specialist HF services which has negative impacts on their healthcare experiences and health-related outcomes. As emerging evidence-based treatments are being incorporated into clinical guidelines, it is timely to focus on the management of this phenotype. This review aims to explore literature around care provision for HFpEF in the United Kingdom; to characterise and assess HFpEF care pathways against current standards, and to generate evidence to create an optimised framework of care. https://doi.org/10.1093/eurjcn/zvae119 August 2024 Long Term Conditions Systematic review and narrative synthesis of the experiences of individuals with chronic pain participating in digital pain management interventions Strain JDR, Welch L, Sadler E The use of digital pain management interventions has grown since the Covid 19 pandemic. The aim of this study was to systematically review and synthesise evidence from qualitative studies regarding the experiences of individuals with chronic pain participating in digital pain management interventions in primary care and community settings. https://doi.org/10.1371/journal.pone.0306455 July 2024 Long Term Conditions Beyond individual responsibility: Exploring lay understandings of the contribution of environments on personal trajectories of obesity Serrano-Fuentes N, Rogers A, Portillo MC Reversing the upward trajectory of obesity requires responding by including the multiple influences on weight control. Research has focused on individual behaviours, overlooking the environments where individuals spend their lives and shape lifestyles. Thus, there is a need for lay understandings of the impact of environments as a cause and solution to obesity. This research aimed to understand the influence of environments on the adoption of health practices in adults with obesity and to identify lay strategies with which to address environmental barriers to behaviour change. https://doi.org/10.1371/journal.pone.0302927 May 2024 Long Term Conditions Interventions to Foster Resilience in Family Caregivers of People with Alzheimer's Disease: A Scoping Review. Santonja-Ayuso L, Corchón-Arreche S, Portillo MC The family caregiver of a person with Alzheimer's disease still experiences, in most cases, negative consequences in their biopsychosocial environment, which are related to the acquisition of this role. However, it has been observed that this fact is not universal in this type of population since benefits can be obtained in the act of caring through the development of resilience. Given this possibility and given that nurses are the health professionals who support people in this illness process, there is an urgent need to identify which non-pharmacological interventions could improve or promote resilience in family caregivers of people with Alzheimer's disease. https://doi.org/10.3390/ijerph21040485 April 2024 Long Term Conditions Methodological Proposal for the Adaptation of the Living with Long-Term Conditions Scale to the Family Caregiver Marín-Maicas P, Portillo MC, Corchón S, Ambrosio L Caring for people living with LTCs has a negative impact on the quality of life of caregivers, affecting their psychological, emotional, social, physical, and financial well-being. Evaluating how the family caregivers live with LTC can provide social health professionals with important information when planning interventions that favor better living . Therefore, it would be useful to have a tool available that allows for objectifying the degree to which people live with LTCs, for both the individuals affected by LTCs and the family caregiver. Presently, many scales exist that allow for measuring different concepts in family caregivers.However, although an instrument exists that measures the degree of living with LTC, according to the people with LTCs the “Living with Chronic Illness Scale” , no instrument was found that measures the degree of living with LTCs of family caregivers that includes all the dimensions that shape said process. This gap in the literature, in relation to measurement instruments that evaluate how the family caregiver experiences living with LTCs, is the common thread in this work. Based on an instrument created for people living with LTCs, an adaptation of this scale was planned to extend the reach of the instrument to family caregivers. Numerous recommendations exist on the process of adaptation of a scale to a context different from which it was created, but the available guides only refer to the methodological process for their transcultural adaptation, and especially to the guidelines established that allow the use of the scale in a language that is different from the one used for its creation. However, no specific system with the necessary methodological steps to be taken for the adaptation of the EC-PC to the family caregiver was found. Therefore, the aim of this study is to present a detailed description of the methodological process of adapting the EC-PC to the family caregiver (EC-PC-Family), providing transparency to the process followed to construct a robust instrument, to contribute towards filling the gap found in the scientific literature. https://doi.org/10.3390/nursrep14010041 March 2024 Long Term Conditions Change in treatment burden among people with multimorbidity: a follow-up survey Hounkpatin HO, Roderick P, Harris S, Morris JE, Smith D, Walsh B, Roberts HC, Dambha-Miller H, Tan QY, Watson F, Fraser SD Background: Treatment burden is the effort required of patients to look after their health and the impact this has on their functioning and wellbeing. Little is known about change in treatment burden over time for people with multimorbidity. Aim: To quantify change in treatment burden, determine factors associated with this change, and evaluate a revised single-item measure for high treatment burden in older adults with multimorbidity. https://doi.org/10.3399/bjgp.2022.0103 October 2022 Long Term Conditions Person-centred integrated care for people living with Parkinson's, Huntington's and Multiple Sclerosis: A systematic review Bartolomeu Pires S, Kunke Dl, Kipps C, Goodwin N, Portillo MC People living with long-term neurological conditions (LTNCs) have complex needs that demand intensive care coordination between sectors. This review aimed to establish if integrated care improves outcomes for people, and what characterises successful interventions. https://doi.org/10.1111/hex.13948 January 2024 Long Term Conditions

ADOPTED: Improving patient safety, workforce wellbeing and NHS efficiency through improved shift patterns for nursing staff: study protocol Principal Investigator: Dr Chiara Dall'Ora, University of Southampton Funded : Academy of Medical Sciences Springboard grant Starts: 1/9/23 Ends: 31/8/24 Lay summary What is the problem? If the COVID-19 pandemic has taught us something, it is how important the wellbeing of the health workforce is. Nurses form a big part of the health workforce, yet many leave their job because of poor working conditions. In recent years, hospital managers introduced long shifts for nurses, hoping nurses would be happier with their work-life balance. However, our research found that long shifts have negative effects for nurses and patients. We still do not know what good shift patterns look like. What will we do? We will identify possible improvements to shift patterns that work for nurses, their managers and patients. We will interview nurses and their managers to understand what they value when it comes to shift rostering. We will talk with a group of patients to understand what good care looks like to them. We will then run an online experiment. In this experiment we will present staff with a series of modified shift patterns. Using statistics, we will understand which shift patterns staff prefer. Why is this important? If we find changes to shift patterns that are acceptable for nurses, managers and patients, we can trial these changes in a real-life experiment. If the experiment - called "trial"- shows that changes to shift patterns work, fewer nurses will leave their jobs. If we find how to make nurses’ work less tiring, they will make fewer mistakes that compromise patient care. In addition, if fewer nurses leave, healthcare systems will save money.

WHELD: Training care home staff to improve well-being and mental health of dementia residents led by NIHR ARC Peninsula and working with NIHR ARC South London, NIHR ARC East Midlands, NIHR ARC East of England, NIHR ARC North East North Cumbria, NIHR ARC North West Coast and NIHR ARC Yorkshire and Humber Implementation of evidence-based cost-effective training for care home staff to improve Wellbeing and mental HEaLth for care home residents with Dementia and reduce unnecessary sedative medications (WHELD into Practice) Principle Investigator: Professor Clive Ballard Team members: Joanne McDermid, Jane Fossey, Barbara Woodward Carlton, John-Paul Taylor, Louise Robinson, Martin Orrell, Clare Hulme, Sube Banerjee, Esme Moniz-Cook, Dag Aarsland, Annette Boaz, Clarissa Giebel, Caroline Watkins, Jo Day Partners: NIHR ARC South West Peninsula ARC, University of Exeter, NIHR ARC Yorkshire and Humber, NIHR ARC East Midlands, NIHR ARC East of England, NIHR ACR South London, NIHR ARC North West Coast , NIHR ARC North East and North Cumbria, University of Plymouth, University of Newcastle, University of Hull, King’s College London, University of Nottingham, South West AHSN, Pendennis Care Home, Devon Partnership NHS trust, Alzheimer’s Society. Research sites: University of Exeter, University of Newcastle, University of Hull, King’s College London, University of Nottingham, University of Liverpool Starts: 1/09/2021 Ends: 31/03/2023 Lay Summary WHELD is an evidence-based person-centred training programme which, in 4 clinical trials involving 2349 care home residents with dementia, demonstrated benefits in well-being and mental health and a reduction in sedative medications across London and Buckinghamshire. No similar programme has been successfully implemented in the UK or elsewhere. Nationwide implementation would have a major impact on well-being among the most vulnerable people with dementia. Lead ARC South West Peninsula with implementation sites also in East Midlands, East of England, North East and North Cumbria, North West, and Yorkshire and Humber ARCs WHELD intervention resources have been optimized for implementation, based on the results of our recent COVID WHELD programme. WHELD will now be implemented in 75 care homes in ARC regions where WHELD has not previously been delivered. Implementation evaluation will identify implementation enablers and barriers, fidelity, reach and buy-in, and provide illustrative case studies. Engagement of PPI representatives and stakeholders to Develop Real World Implementation Plan will be integrated throughout the programme. Key stakeholder groups for this work will include commissioners, senior representatives from Integrated care system organizations, representatives from the AHSNs in the different ARC regions and care home owners/senior managers. A series of dissemination activities, including stakeholder workshops, will enable the development of a plan for scaling up the implementation to national level and any required adaptations to WHELD resources. Progress by October 2022: The digital materials for the programme have been optimized. The programme has IRAS approval and CRN adoption. We currently have 19 participating care homes, with a goal of completing recruitment by the end of March 2023. The first PPI and stakeholder workshops have been completed, with further workshops through the autumn and in the New Year.

Developing a core cohort of community researchers in Wessex: towards a sustainable Wessex Community of Practice for public health research co-production Chief Investigator: Professor Nisreen A Alwan, Professor of Public Health, Centre for Population Health Sciences, School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton and University Hospital Southampton NHS Foundation Trust Team: Dr Donna Clutterbuck, Research Fellow, University of Southampton Megan Barlow-Pay, PPIE Lead, NIHR Research Support Service Professor Julie Parkes, Professor of Public Health, University of Southampton, University Hospital Southampton NHS Foundation Trust and Health Education England Wessex Dr Kath Woods-Townsend, Associate Professor (Research) and Lifelab Project Manager, University of Southampton Mirembe Woodrow, Senior Public Health Practitioner, Southampton City Council and PhD student, University of Southampton Partners: Hampshire and Isle of Wight NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, Bournemouth University, University of Portsmouth, University of Southampton, Southampton City Council, NIHR Research Support Service Specialist Centre for Public Health, LifeLab, University of Southampton / NIHR Southampton Biomedical Research Centre, Health Determinants Research Collaboration, Southampton, Southampton Centre for Research Engagement & Impact (SCREI), Centre for Seldom Heard Voices, Bournemouth University, Start: 1 October 2024 End: 31 March 2026 Summary Public health research priorities must stem from the needs of the communities served by such research, particularly those most socially and economically disadvantaged, as well as community groups that are seldom heard. Therefore, community members with lived experience of health conditions and the various factors shaping health and wellbeing have a central role in shaping such research. Co-creating research with the public can lead to research findings that are more relevant to population health and wellbeing, leading to a reduction in heath inequalities. The purpose of this project is to develop a core ‘cohort’ of community public health researchers using an approach that considers the multiple social forces that shape people’s identities to inform research design that is meaningful to Wessex local communities. This cohort will form a Community of Practice (CoP) for research co-design that can help us reach those seldom heard groups in our local communities and understand underrepresented perspectives to inform relevant and meaningful health research priorities, questions and methods. People from such communities are more likely to feel comfortable to inform research that is led or co-led with community researchers. This project will be a Partnership between the NIHR Research Support Service (RSS) National Specialist Centre for Public Health (NSCPH) which aims to support the generation of high-quality research evidence aimed to inform decisions about which interventions have the greatest likelihood to improve population health and reduce health inequalities, and the Healthy Communities Theme of the NIHR ARC Wessex. In the first stage of the project, we will engage with stakeholders, including members of the public, voluntary organisations, Local Councils and health services to shape the project protocol and to co-develop its strategy, key milestones and outcomes. In the second phase of the project, we envisage a group of community researchers being recruited and trained in participatory research (or other research methods of their choice) and be provided with opportunities to link in with health researchers. In the third phase of the project, the community researchers will then choose a pathway (or more) that suits their needs from conducting community-based research, linking with other community members to inform further research projects, co-creating research ideas, or informing research proposals developed by researchers within the ARC or through the RSS. In the fourth phase of the project, we will evaluate the above activities and synthesise and disseminate lessons learnt from the project towards sustainability of our CoP framework. The project’s Research Fellows will also work with public contributors to disseminate findings in ways that are meaningful, alongside preparing publication materials for journals and conferences, and producing infographics. The CoP will help us to co-design health research based on local and regional need; provide stakeholder input into public health research proposals in Wessex; contribute to governance and delivery of NSCPH; and support meaningful and equitable research partnerships with community stakeholders and the public.

COMPLETED: The ImPACt study - Improving physical activity of older people in the community Club members at Brendoncare joining in group exercise Principal Investigator: Dr Stephen Lim Team members: Dr Stephen Lim (NIHR Clinical Lecturer in Geriatric Medicine, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Professor Helen Roberts (Professor of Medicine for Older People, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Dr Kinda Ibrahim (Senior Research Fellow, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Esther Clift (Consultant Practitioner in Frailty, Southern Health NHS Foundation Trust, Lymington New Forest Hospital), Samantha Agnew (Head of Clubs Services, The Brendoncare Foundation , Winchester), Pam Holloway (Patient representative) Start: 1 February 2020 Ended: 31 October 2021 Project Partners: University of Southampton, University Hospital Southampton NHS Foundation Trust, Southern Health NHS Foundation Trust, Brendoncare. Lay summary Physical activity is important for older people. It has many benefits including maintaining older people’s ability to perform activities of daily living, be independent, and improve their well-being. However, many older adults living in the community do not engage in regular physical activity. Findings We found that we could train volunteers to support older people during the COVID-19 pandemic to stay active by performing exercises that help strengthen their muscles. Trained volunteers from Brendoncare led the online group exercises for older people who attended online community clubs during the COVID-19 pandemic. This was a challenging time when social distancing and lockdown rules were in place, which limited opportunities for older people to stay active. We recruited 19 volunteers, and 15 volunteers completed the training. The volunteers were mainly female (78%), with an average age of 68 years. The exercises were seated exercises and older adults were given exercise bands to increase the exercise intensity. Halfway through the study, lockdown restrictions were lifted, and some groups continued the group exercise in a face-to-face setting. The volunteers led 184 group weekly exercise sessions (127 online and 57 in-person). 30 older adults participated in the group exercises. We interviewed volunteers, older adults and Brendoncare staff to find out more about what they thought of the online group exercise. The older adults enjoyed the intervention and understood the benefits of exercising. Additionally, they felt that they could exercise in a relaxed way with their peers without fear of being judged. The group exercises helped reduce social isolation and motivated older adults to engage with the exercises. Volunteers were enthusiastic to support the exercise groups. They appreciated the training and opportunity to lead the group exercises. One volunteer reported that the role gave her a sense of purpose by playing an active role the community club. Brendoncare staff members were a great help to the older adults and supported them with any issues, in particular those who were less familiar with the internet. At six months, we found that older adults who participated in the group exercise had an improved physical activity level. The time spent in light physical activity per week improved from an average of 1530 minutes per week to 1620 minutes per week. Only two minor incidents happened during the group exercises. Two participants experienced worsening of old injuries while performing the exercises. Overall, we found that volunteers can be trained to lead online group seated exercises. The exercises were safe and older adults enjoyed the exercises as well as the social interaction in the group setting. What we did with the new knowledge We supported Brendoncare in continuing the exercise groups after the study had ended. We presented our study findings to the board of trustees and demonstrated the exercises. Brendoncare has since employed an activity coordinator to continue to role of training volunteers and supporting volunteer-led exercise groups within Brendoncare. We trained the activity coordinator and shared our exercise sheets and other study materials to help Brendoncare develop their own training package. They are now actively recruiting more volunteers to lead group exercises in their community clubs. https://www.brendoncare.org.uk/get-involved/support-us/volunteering/#:~:text=Chair%20Based%20Exercise%20Volunteer,improving%20their%20health%20and%20wellbeing . Where next? Having explored how we can trained volunteers to engage with healthy community-dwelling older adults to stay active through online group exercises, we collaborated with researchers from the Southampton Biomedical Research Centre and Bournemouth University to further develop this volunteer-led online intervention. We have been successful in securing research funding (£51,000) from University Hospital Southampton NHS FT to conduct a study to explore a multimodal intervention consisting of exercise, nutrition and behaviour change support, to engage with older people living with frailty who have been discharged from hospital, to stay active and eat well. This research is now underway and due to be reported in the summer of 2024. What did people say about the work? Volunteer : “We do it because we want to help others…. we enjoy it. I'm gonna go back to belonging again, I feel that I'm benefiting from the group. Because again, I feel like I belong to that group….. I get so much out of it.” Club member: ‘We are not self-conscious when they (volunteers) are around. We have a laugh as well.’ Club member: ‘I’ve really enjoyed it because it keeps you in touch with people, especially during this COVID….. I still feel as if I’m part of a group.’ NEWS: ImPACT volunteers recognised for their wor k ImPACt exercise video IMPACT Exercise with Steve and Esther from NIHR ARC Wessex on Vimeo . Impact Exercise video using Resistance bands - Dr Sam Meredith watch the video on Vimeo Publications https://doi.org/10.1007/s40520-020-01556-6 https://doi.org/10.1007/s12603-020-1442-0 https://doi.org/10.7861/clinmed.2022-0283 https://doi.org/10.1186/s12877-022-03589-0 doi.org Evaluating the feasibility and acceptability of virtual group exercise for older adults delivered by trained volunteers: the ImPACt study protocol Introduction Physical activity is important for healthy ageing. Despite strong evidence on the benefits of physical activity for health and well-being, physical inactivity remains a significant problem among older adults. This study aims to determine the feasibility and acceptability of implementing an online volunteer-led group exercise for older adults. Methods A quasi-experimental mixed-methods approach will be used in this study. A training programme will be developed to train volunteers to deliver online group exercises to older adults aged >65 years (n=30). The primary outcome is the feasibility of implementing the intervention. This will be assessed by the number of volunteers recruited, trained, and retained at the end of the study, and the number of exercise sessions delivered and completed by participants. Secondary outcomes include physical activity levels measured using the Community Health Model Activities Programme for Seniors questionnaire, Barthel Index, EQ-5D-5L as a measure of health-related quality of life, SARC-F to determine sarcopenia status, and PRIMSA-7 to determine frailty status. Outcomes will be measured at baseline and at 6 months. Qualitative interviews will be conducted with volunteers(n=5), older adults (n=10) and family members (n=5) to explore their views on the intervention. Analysis Simple descriptive statistics will be used to describe participant characteristics, the feasibility of the study and the impact of the intervention on health outcomes. Parametric(t-test) or non-parametric(Mann-Whitney U test) statistics will be used to analyse continuous variables. χ2 test will be used for categorical variables. Qualitative data will be analysed using an inductive thematic analysis approach. Ethics and dissemination This study received ethical approval from the University of Southampton Faculty of Medicine Ethics Committee and Research Integrity and Governance committee (ID: 52 967 .A1). Study findings will be made available to service users, voluntary organisations and other researchers who may be interested in implementing the intervention. Trial registration number [NCT04672200][1]. [1]: /lookup/external-ref?link_type=CLINTRIALGOV&access_num=NCT04672200&atom=%2Fbmjopen%2F12%2F2%2Fe052631.atom

PIVOT: Promoting Increased physical actiVity in hospitalised Older adults with Trained volunteers NIHR Advanced Fellowship Award: Dr Stephen Lim, Honorary Consultant Geriatrician University Hospital Southampton NHS Foundation Trust and Principal Clinical Research Fellow, University of Southampton Team : Dr Samantha Meredith Research Fellow, University of Southampton, Professor Beth Stuart Clinical Trials Co-director of the Pragmatic Trials Unit, Queen Mary University of London, Professor Carl Thompson Applied Health Research, University of Leeds Aim(s) of the research To determine whether hospital volunteers can be trained to engage older people in hospital to be more active. We want to know if this intervention will work in different hospitals and explore factors that will support or prevent it from being delivered successfully. Background to the research Between 30 and 60% of older people in hospital are at risk of losing muscle strength and function, known as deconditioning. This reduces their ability to look after themselves independently. Low physical activity level contributes to deconditioning but dedicated physical activity sessions can benefit older inpatients. In most studies, physical activity is led by paid staff. New ideas are needed to ensure additional physical activity sessions are costeffective and sustainable. The Southampton Mobility Volunteer study showed that trained volunteers can safely engage older inpatients to be more active. However, more information is needed on how to make this approach accessible to more people in more hospitals. Design and methods used Hospital inpatients aged 65 years and older will be invited to participate in the study. We will conduct the study in four hospitals. The hospitals will be different in size and from a wider region to include a range of population groups from different settings and context. This is so that different social groups are represented, and the research will be more representative of the wider population. We will use one hospital as a ‘control site’ – where patients will not get volunteer input – to compare our findings against. Volunteers will encourage participants who can walk independently to walk twice daily. Patients who need help with walking will do bedside exercises. They will be encouraged to walk once they can do so independently. We want to know whether trained volunteer delivered exercise sessions are feasible and acceptable to hospitals. We will determine this by collecting data on volunteer recruitment and training, patient recruitment and the walking/ exercises intervention. We will interview patients, staff, and volunteers as the intervention is delivered to establish what worked well and what could be improved. Other outcomes will include physical abilities, muscle strength, length of stay and readmission rates. We will analyse how much money it costs the NHS to deliver the intervention. Patient/service user, carer and public involvement The James Lind Alliance Priority Setting Partnership has highlighted promoting of independence, and physical and emotional well-being as 2 of the top 3 key research priorities for older adults. More specifically, our PPI research with 92 older people showed that 45% of them had experience with hospital volunteers and all spoke highly of their contribution. Most respondents thought volunteers could be trained to help with mobility. My feasibility study (SoMoVe study) confirmed the volunteer-led intervention was acceptable to patients, volunteers, and staff in one hospital. Patients were grateful that the volunteers encouraged them to be more active. Staff members valued the work of the volunteers. This proposal was developed with the support of 2 public researchers, the volunteer services manager and a hospital therapy lead. The study protocol and study documents will be developed with PPI collaboration. 2 public researchers will be invited to join the study steering group. PPI input will be paid at INVOLVE rates. Dissemination Findings from this study will be shared through conferences, academic papers/reports, and media/social media. In collaboration with the Academic Health Science Network, we will share our findings with commissioners, providers of care and voluntary organisations. Study findings will be of interest to voluntary services, healthcare professionals, and directorate managers. A collection of resources will be produced to encourage the adoption of this intervention in other settings.

PARTNERS II: Testing implementation and evaluation of a digital tool for multisectoral support and management of people living with Parkinson’s disease and/or arthritis. Chief investigators: Professor Mari Carmen Portillo, Professor of Long Term Conditions, School of Health Sciences, University of Southampton. Dr Dorit Kunkel, Lecturer, University of Southampton and Research Design Service, School of Health Sciences Team: Dr Katherine Bradbury Health Psychologist, Senior Research Fellow NIHR ARC Wessex Digital Health Lead University of Southampton. Dr Lindsay Welch, Associate Professor of Nursing Practice, Bournemouth University & University Hospitals Dorset Sandra Bartolomeu Pires, PHD Researcher, School of Health Sciences, University of Southampton. Professor Christopher Edwards, Consultant Rheumatologist, Honorary Chair of Clinical Rheumatology, Associate Director Southampton NIHR Clinical Research Facility, University Hospital Southampton (NHS) University of Southampton. Dr Lindsey Cherry, Associate Professor (Podiatry Rheumatology), School of Health Sciences, University of Southampton. Francesca White, Senior Strategic lead for Partnerships, Hampshire and Isle of Wight Integrated care board. Dr Hayden Kirk, Clinical Director Adults Southampton, Solent NHS Trust ( Hampshire and Isle of Wight NHS Foundation Trust) Caroline Aylott, Head of Research, Versus Arthritis, Carolyn Fitton, Senior Research Assistant, School of Health Sciences, University of Southampton. Gillian Merritt, Service Improvement Manager, Parkinson’s UK. Peter Rhodes, Senior Programme Manager, Industry & Innovation, Health Innovation Wessex. Partners: University of Southampton, Bournemouth University & University Hospitals Dorset, Hampshire and Isle of Wight NHS Foundation Trust, NIHR Clinical Research Facility, University Hospital Southampton, Hampshire and Isle of Wight Integrated care board, Versus Arthritis, Parkinson’s UK, Health Innovation Wessex. Start: 1 October 2024 End: 31 March 2026 Summary Self-management can help people with long term conditions manage their health better. Existing self-management tools focus on healthcare (medication management, appointments) and fail to understand how people live with and adjust to their long-term conditions. This includes social support (family/friends) and other resources and networks available like the voluntary sector, industry and community groups. We have created an intervention (an action to improve a situation or prevent it getting worse) to support self-management for people with Parkinson’s Disease and/ or Arthritis and their family/carers. This intervention recognises the role of social support, charities and other organisations in adjusting to living with a condition. Based on previous study findings where we looked at the literature and talked to patients and health care professionals, we co-produced a digital tool website/app ready for testing. Aim of the research: To explore the acceptability (ease of use) and how helpful the tool is in supporting self-management by collecting data and by talking to patients and carers who have used it and health care workers. The PARTNERS tool will support professionals and other organisations to connect, share resources and optimise communication and referrals, leading to more personalised and cost-effective use of resources (beyond healthcare) in the community. Design and methods: Mixed methods acceptability and implementation study. The research will take place in community settings in Wessex. We will prioritise disadvantaged groups (those less comfortable using technology and less able to access available resources and support). We will test the PARTNERS tool with patient, carers, health professionals and voluntary organisations (Parkinson’s UK and Versus Arthritis). Testing will help understand how the tool is used and what helps or hinders its success. We will talk to people who used it to identify how useful and helpful it was and how to integrate it with their normal care. The research will support better self-management of Parkinson’s Disease and/or Arthritis, make recommendations for policy development and provide evidence for how to improve NHS services. PPI: We are working with people with Parkinson’s Disease and/or Arthritis and their families/carers. We will work together as equal partners to decide their level of involvement, roles, ways to input and training needs. We will also explore what works best or what we should do differently in their involvement. Dissemination: We will share our learning across the different groups involved. This will include presentations, policy briefings, newsletters and public events.

PROCED-DST: PROactive, Collaborative and Efficient complex Discharge – Decision Support Tool Chief Investigator: Dr Chris Duckworth, Senior Research Engineer, University of Southampton Email: C.J.Duckworth@soton.ac.uk Team: Professor Michael Boniface, Director of the IT Innovation Centre, University of Southampton, (HEI) Dr Carlos Lamas-Fernandez, Associate Professor, Southampton Business School Dr Dan Burns, Senior Research Engineer, University of Southampton Dr Mark Wright, Patient Flow Lead, University Hospital Southampton NHS Foundation Trust (NHS) Rachel Leyland, Complex Discharge Team Manager, Hospital Southampton NHS Foundation Trust (NHS) Ian Dickerson (PPIE) Partners: Hampshire and Isle of Wight NHS Foundation Trust, Hampshire Hospitals NHS Foundation Trust, Isle of Wight NHS Trust, Portsmouth Hospitals University NHS Trust, University Hospital Southampton NHS Foundation Trust, University of Southampton, Health Innovation Wessex. Start: 1/10/24 End: 31/3/26 Summary As of January 2023, 14,436 patients a day (14% of total capacity) remained in hospital despite being well enough to leave. This is due to delays in arrangements for onward care. Discharge delay occupies beds putting pressure on a wide-range of NHS services. There are currently 7.6 million patients waiting for treatment and an average waiting time of 15 weeks. Leaving hospital at the right time is also better for patients for many reasons. It reduces physical and mental deconditioning and chance of hospital infections. Part of the problem is organising further care required after a hospital stay. For patients in hospitals for seven days or more, 65% are delayed because they are waiting for after-care including care at home, short-term reablement and permanent care or a nursing home. Discharge planning involves lots of people and organisations from patients through to clinical teams in hospitals, community care, and local authorities. Organising care takes time considering the availability of social care services and mediation with patients and their families. It is therefore important that patients are assessed, and needs identified as early as possible within a hospital stay to give time for planning and conversations. An initial discharge assessment is supposed to be made with the first 24 hours of hospital admission. In practice this planning is provided for less than 50% of patients. Staff workload and inability to identify care requirements can delay assessments. Aims: In a previous project called PROCED, we developed a machine learning model to predict onward care needs when someone is admitted to hospital. Machine learning is a computer programme that can learn from information about patients and the services they use to make predictions. We have compared the model against predictions made by clinicians, and the results have shown it works well. In PROCED-DST we aim to investigate how a machine learning prediction can support better discharge planning. By planning care earlier during hospital stays gives more time for patients and families to discuss care needs with care workers. Ultimately we aim to improve the chance that patients can leave hospital on time. Approach: We will consider how a computer algorithm can help clinicians organise onward care by predicting admitted patient’s potential onward care needs. We will organise collaborative sessions with clinicians, patients, and computer programmers to understand how it could be used in the hospital and consider how it may benefit or impact patients. Patient and Public Involvement: Patients and Public will be directly involved in designing, testing and evaluating a decision support tool and help decide how it should be used by care providers to help plan onward care. PPI will influence data usage, patient journey, algorithms and how this should be communicated. The public will participate in a steering committee who will organise a series of workshops to engage patients and public in the research. Dissemination : Communication materials will engage the public and decision makers. We will work with PPIE support networks to develop accessible communication and ensure distribution to diverse communities. Evidence of effectiveness, safety and acceptance will be published. A decision support tool with computer-based decision support will be demonstrated. The outcomes will be championed with institutional, regional, and national implementation teams.

< Back Skaiste Linceviciute Research Fellow Long Term Conditions Skaiste Linceviciute is a recently appointed Research Fellow in the ARC Wessex Mental Health Hub at the University of Southampton and will be contributing to new research opportunities and collaborations. Skaiste Linceviciute has a BSc (Hons) in Psychology and a PhD in Health Sciences and Social Work at the University of Portsmouth. Skaiste’s PhD is about the experiences of older adults with a long-standing and a late onset asthma. Using different methods and approaches she was successful in researching people’s narratives that explored the meaning of living with asthma for older persons. Prior to joining the ARC Wessex Mental Health Hub, Skaiste worked on a number of projects supporting different stages of research at the University of Portsmouth and the University of Westminster. Beyond academia, Skaiste has also worked in other education institutions offering pastoral and academic support to young people. Previous Next