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9ae71e9b-aaf2-477f-a174-17b115a2513a COMPLETED ADOPTED PROJECT: Neuro LTC: Assessing Baseline Factors, Critical Events and Fatigue in Long Term Neurological Conditions Principal Investigator: Dr Chris Kipps, Neurologist and Hon Senior Lecturer, University of Southampton Team Members: Dr Helen Roberts Veena Agarwal Dr John Spreadbury Dr Emma Stack Dr Sarah Fearn Prof. Ann Ashburn Start Date: 23/08/17 End Date: 31/12/22 Project Funder: University Hospital Southampton NHS Foundation Trust Lay Summary Many neurological conditions have a long-term impact on quality of life with varying requirements for intervention and care over time. This has the potential to create a mismatch between the needs of patients at particular stages in their illness, and the skill levels of clinicians and available resources required to assist them appropriately. This project aims to identify the factors that influence everyday care requirements (baseline factors) and to identify the critical events that have the potential to lead to an increase in care requirements. In many neurological conditions, there may also be ‘hidden’, less evident or more subjectively perceived factors that influence care requirements, of which fatigue may be amongst the most common. Thus, this project also includes research into the prevalence and effects of fatigue in neurological conditions. By identifying and better understanding baseline factors, critical events and the features of fatigue in long term neurological conditions, this project will help to enable future research to stratify long-term neurological conditions by the degree of complexity and individual burden and match service users more effectively to appropriate clinical and social care resources. Method The research will focus on the following five neurological conditions: epilepsy, Huntington's disease, motor neurone disease, multiple sclerosis, and Parkinson's disease. The study will involve the use of mixed methods. We will use surveys and focus groups with service users (patients and caregivers) to identify the factors that help to maintain an individual’s optimal level of living with the neurological condition (baseline factors), the critical events that can cause a change in care requirements in each of the five neurological conditions, and the impact of fatigue. What did we learn? 1. What factors affect the care that people living with a neurological condition require? We found that mobility was the most important factor for assessing care needs from the patient perspective. This was followed by dexterity, eating and drinking, speech and communication, cognitive impairment and mental health. This order of relative importance was found to be constant by age, disease progression, gender, living alone, or presence of co-morbidities. However, younger patients, more progressed patients, females, those living alone and those with co-morbidities tended to produce higher average scores of importance, meaning they felt their symptoms in these areas had a higher impact on their care needs. We asked participants what helped them to manage their condition and live well. The most important factors were: Social support, exercise, lifestyle factors and supportive equipment. Less recognised factors such as access to healthcare professionals, the patient’s mentality and diet were also noted. We found that recently diagnosed patients cited ‘employment’ and ‘feeling informed’ more frequently, whilst less recently diagnosed patients mentioned ‘having a carer’ and ‘getting out of the house’ more frequently. 2. What events lead to an unplanned GP or hospital visit for people living with a neurological condition? We found that there are specific events that are likely to lead to an unplanned GP or hospital visit for people with neurological conditions. In addition to well-recognised causes of crisis such as falls, trigger events less widely associated with crisis were identified, including difficulties with activities of daily living and carer absence. The less-recognised trigger events tended to be managed more frequently in the community. Many of these community-based crises had a greater impact on care needs than the better-known causes of crisis that more frequently required hospital care. Patient and carer responses indicated a good general knowledge of potential crisis triggers. Patients were more aware of mental health issues, and carers were more aware of cognitive impairment and issues with medications. 3. What is the frequency and impact of fatigue for people living with neurological conditions? We found that the prevalence of clinically significant fatigue across five neurological conditions (Parkinson’s, MS, epilepsy, MND and Huntington’s disease) was 51%. The highest prevalence of fatigue was amongst people with MS and MND, and lowest was amongst people with epilepsy. More than a third of participants reported that fatigue frequently impacted their social life and ability to concentrate. Factors associated with clinically significant fatigue were male gender, age, frequency of fatigue greater than twice a week and fatigue often having a detrimental effect on social life. What difference can this new knowledge make? Understanding the factors that affect the care needs of people living with neurological conditions can help to ensure care resources are targeted at those most at risk of high care needs. Understanding that younger patients, more progressed patients, females, those living alone and those with co-morbidities generally considered their symptoms to have a higher impact on their care needs, can allow us to target these patients with relevant support and interventions. Identifying the most important factors for people with neurological conditions to self-manage their conditions and live well can enable us to share this information more widely and promote self-management tools and techniques amongst this population. By increasing understanding of events that lead to a GP or hospital visit, we can better inform strategies to prevent them. Similarly, by identifying under-recognised crisis triggers we can build a better understanding of ‘risk factors’ for an unplanned GP visit or hospital admission. Identifying that Patients were more aware of mental health issues, and carers were more aware of cognitive impairment and issues with medications means that we can ensure healthcare professionals are asking the right questions to the right person. We also noted some differences in how patients and clinicians describe the events that precede a GP or hospital visit. This can help to ensure healthcare professionals are using the right language when assessing the risk of individual patients. By increasing understanding of events that lead to a GP or hospital visit, we can better inform strategies to prevent them. Similarly, by identifying under-recognised crisis triggers we can build a better understanding of ‘risk factors’ for an unplanned GP visit or hospital admission. Identifying that patients were more aware of mental health issues, and carers were more aware of cognitive impairment and issues with medications means that we can ensure healthcare professionals are asking the right questions to the right person. We also noted some differences in how patients and clinicians describe the events that precede a GP or hospital visit. This can help to ensure healthcare professionals are using the right language when assessing the risk of individual patients. 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. People with a neurological condition are more at risk of unplanned hospital visits and admissions than many other groups. 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. What Next? We have already taken some of 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 -Create an impact inventory for neurological pathways -Create questionnaires that aim to identify those most at risk of an unplanned GP or hospital visit (implemented through My Medical Record) We are continuing to analyse the data and disseminate findings to a wide audience. Publications The Causes and Impact of Crisis for People with Parkinson’s Disease: A Patient and Carer Perspective - Sarah Fearn, Sandra Bartolomeu Pires, Veena Agarwal, Helen C. Roberts, John Spreadbury, Christopher Kipps, 2021

5464c879-04a7-47dc-8751-6ab5a9ad6d1c ADOPTED: Incidental Interaction: Novel Technology to Support Elders-as-Athletes through Augmenting Everyday Interactions Lead: Professor M.C Schraefel Team: Professor C T Freeman, Dr M B Warner Start date: October 2022 End date: January 2024 Partner organisations: Abri Different Strokes Southampton Solent NHS Trust Z-Health Performance Solutions Background Elders classically are framed as people who are inevitably getting weaker, losing muscle and bone mass, cognitive capacity, and inevitably requiring care to manage simple "activities of daily living" such as walking, feeding, toileting and bathing. These effects limit their capacity to live independently and healthily in their own homes.To address this decline, research in even just the past five years has been looking for new molecules and therapies to slow or reverse aging, to provide if not longer life, then better quality of life throughout the life course. While these advances in science and technology promise wonders (for those who will be able to afford them), there is already established science that demonstrates how we can all improve our life quality over our lifespan. This same science can, today, improve the life quality of our elders - starting these interventions at any age. It's building strength:a well understood, human practice. No technology is required to build and maintain strength; only to move against gravity. Repeatedly. Research has repeatedly shown that resistance training for elders can improve quality of life while mitigating if not eliminating age associated co-morbidities. And yet, for all its proven effective, cheap - even free - benefits for healthful longevity, many elders are simply too weak to take care of themselves. According to a 2019 report from AgeUk on the State of Elder health, 15% of those aged 65-69, rising to 1 in 3 citizens over 85 in the UK require care.Some of the well-documented challenges to strength building are that, unlike a pill or garment or augmentation, to achieve the benefits of strength, one has to do the work oneself, actively. That takes time, effort, as well as the knowledge, skills and practices to support it. Mustering the effort can be even harder to achieve when one is already feeling weak, recuperating from an injury, a hospital stay, or from loneliness of isolation.The research in this project is specifically designed to address the challenges that keep elders from actively engaging in strength work. Our approach is to co-create interactions to help build the knowledge skills and opportunities to practice to build and preserve the strength needed to maintain healthful independence at home. Our approach is simple: design interactive technology and gestures to leverage what we - including elders - do every day that is already strength work: stand, sit, grip, pull, push, reach, balance - and translate these into activities for building strength. We call it this novel protocol "do it twice." Stand from sitting? That's strength. Do it twice. That's strength building - and that supports the knowledge skills and practice of "elder athletes" building capabilities rather than requiring assistance.Our approach is interdisciplinary: experts in Human Computer Interaction, Sensors and Physiotherapy, developing novel, affordable interactive technologies to make strength practice accessible effective and enjoyable with support to guide these activities, reflect progress, and share with friends. We call the approach "incidental interaction for everyday strength."So far, we have tested the approach for feasibility. In this small project, with our partners in sustainable, assisted living housing, NHS Trusts, professional therapy and coaching, and with participating elders as co-designers, we will be refining the interaction, the sensors and the exercise protocols. We will be able to tune our work at each stage to ensure best engagement. In three phases from design, to testing, to in-home evaluations we will together be validating the accessibility and efficacy of our approach.By realizing with this project the potential our preliminary work indicates and that our partners anticipate, we will contribute a new affordable breakthrough approach to help transform elder health and care, to enable longer, stronger elder independence@home.

54d3d6a4-2f97-4fa8-8c83-e41613f3b35d COMPLETED: Co-POWeR - Consortium on Practices of Wellbeing and Resilience in BAME Families and Communities Principal Investigator: Professor Iyiola Solanke, University of Leeds Team: Professor Maria Stokes, School of Health Sciences, University of Southampton; Professor Sabu Padmadas, School of Economic, Social & Political Sciences, University of Southampton; Professor Monica Lakhanpaul, Institute of Child Health, University College London; Professor Claudia Bernard, Professor of Social Work. Department Social, Therapeutic and Community Studies, Goldsmiths College; Professor Shirin Rai, Politics and International Studies, University of Warwick; Professor Raminder Kaur, School of Global Studies, University of Sussex; Professor Gargi Bhattacharyya, Law and Social Sciences, University of East London; Professor Florence Ayisi, Faculty of Creative Industries, University of South Wales; Professor Anna Gupta, Department of Social Work, Royal Holloway, University of London. Duration: 18 months Summary Two viruses - COVID-19 and discrimination - are currently killing in the UK (Solanke 2020), especially within BAMEFC who are hardest hit. Survivors face ongoing damage to wellbeing and resilience, in terms of physical and mental health as well as social, cultural and economic (non-medical) consequences. Psychosocial (ADCS 2020; The Children's Society 2020)/ physical trauma of those diseased and deceased, disproportionate job-loss (Hu 2020) multigenerational housing, disrupted care chains (Rai 2016) lack of access to culture, education and exercise, poor nutrition, 'over-policing' (BigBrotherWatch 2020) hit BAMEFC severely. Local 'lockdowns' illustrate how easily BAMEFC become subject to stigmatization and discrimination through 'mis-infodemics' (IOM 2020). The impact of these viruses cause long-term poor outcomes. While systemic deficiencies have stimulated BAMEFC agency, producing solidarity under emergency, BAMEFC vulnerability remains, requiring official support. The issues are complex thus we focus on the interlinked and 'intersectional nature of forms of exclusion and disadvantage', operationalised through the idea of a 'cycle of wellbeing and resilience' (CWAR) which recognises how COVID-19 places significant stress upon BAMEFC structures and the impact of COVID-19 and discrimination on different BAMEFC cohorts across the UK, in whose lives existing health inequalities are compounded by a myriad of structural inequalities. Given the prevalence of multi-generational households, BAMEFC are likely to experience these as a complex of jostling over-lapping stressors: over-policed unemployed young adults are more likely to live with keyworkers using public transport to attend jobs in the front line, serving elders as formal/informal carers, neglecting their health thus exacerbating co-morbidities and struggling to feed children who are unable to attend school, resulting in nutritional and digital deprivation. Historical research shows race/class dimensions to national emergencies (e.g. Hurricane Katrina) but most research focuses on the COVID-19 experience of white families/communities. Co-POWeR recommendations will emerge from culturally and racially sensitive social science research on wellbeing and resilience providing context as an essential strand for the success of biomedical and policy interventions (e.g. vaccines, mass testing). We will enhance official decision making through strengthening cultural competence in ongoing responses to COVID-19 thereby maximizing success of national strategy. Evidenced recommendations will enable official mitigation of disproportionate damage to wellbeing and resilience in BAMEFC. Empowerment is a core consortium value. Supporting UKRI goals for an inclusive research culture, we promote co-design and co-production to create a multi-disciplinary BAME research community spanning multi-cultural UK to inform policy. CO-POWeR investigates the synergistic effect on different age groups of challenges including policing, child welfare, caring and physical activity and nutrition. WP1 Emergency Powers investigates these vague powers to understand their impact on practices of wellbeing and resilience across BAMEFC. WP2 Children, Young People and their Families investigates implications for children/young people in BAMEFC who experience COVID-19 negatively due to disproportionate socio-economic and psychosocial impacts on their families and communities. WP3 Care, Caring and Carers investigates the interaction of care, caring and carers within BAMEFC to identify how to increase the wellbeing and resilience of older people, and paid and unpaid carers. WP4 Physical Activity and Nutrition investigates improving resilience and wellbeing by tackling vulnerability to underlying health conditions in BAMEFC. WP5 Empowering BAMEFC through Positive Narratives channels research from WP1-4 to coproduce fiction and non-fiction materials tackling the vulnerability of BAMEFC to 'misinfodemics'.

c585330f-e35f-4618-bc81-287d81f85239 The PD Life Study: Exploring the treatment burden and capacity of people with Parkinson’s and their caregivers Principal Investigator: Professor Helen Roberts Research team: Dr Qian Yue Tan (Research Fellow, 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), Dr Simon Fraser (Associate Professor of Public Health. School of Primary Care and Population Sciences, Faculty of Medicine, Southampton General Hospital), Dr Khaled Amar (Consultant Geriatrician and Honorary Senior Lecturer at Bournemouth University, Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust) Start: October 2020 Ends: October 2022 Project Partners: University of Southampton, Bournemouth University, University Hospital Southampton NHS Foundation Trust, Royal Bournemouth and Christchurch Hospitals NHS Foundation . Lay Summary People with Parkinson’s (PwP) have many symptoms including tremor, stiffness, slow movements, constipation, urinary incontinence and mental health issues. They are often older and have other long-term health conditions. PwP need to do many things to look after their health including manage multiple medications, attend healthcare appointments and lifestyle changes such as improving diet and exercise. The effort of looking after their health and its impact on them is termed ‘treatment burden’. Some PwP need help from their family or friends (caregiver) to complete these tasks. Caregivers may also experience treatment burden themselves when caring for someone with Parkinson’s. People’s ability to manage treatment burden is termed ‘capacity’ and is influenced by physical, mental, social and economic factors. People are overburdened when the workload of looking after their health exceeds their capacity. This can lead to poor adherence with treatment, poor quality of life and worse health outcomes. Aim We aim to understand the factors that influence treatment burden and capacity in PwP and their caregivers. Methods Interviews with 15 PwP and 15 caregivers will identify factors that influence treatment burden and capacity. These factors will be explored further in a national survey for PwP and caregivers with support from Parkinson’s UK. We will then form focus groups with PwP, caregivers, voluntary sector representatives, healthcare professionals, policymakers and managers through Parkinson’s Excellence Networks to discuss the findings and prioritise recommendations for change. This study will enable to us develop recommendations of ways to reduce treatment burden and improve future experiences of PwP and their caregivers. This research is also supported by a legacy in memory of Carolyn and Tore-Jan Myhre

71793130-6407-4a7a-8ebf-2af1daf96dd5 COMPLETED: Understanding the psychosocial needs and trajectories of older adults (>64 years) with alcohol use disorder (AUD) from hospital back into community Lead applicant : Professor Julia Sinclair Co-applicants : Dr Rebecca Band, Professor Jackie Bridges Team Dr Steph Hughes – Research Fellow Zara Linssen – Medical Student Sophie Crouzet – Medical Student Stephen Lim – Implementation Champion Melinda King – PPI advisor Start: 01/01/2023 End: 01/07/2024 Partner organisations: University Hospital Southampton NHS Foundation Trust University of Southampton Background Over 200 physical and mental health conditions are caused by alcohol. In England, more people are being admitted to hospital with, and dying from, alcohol-related disease than ever before. In 2018/19, 44.7% of all alcohol related admissions were for people over the age of 65 compared with 14% in 2010/11. In 2021,1563 patients were assessed by the Alcohol Care Team (ACT) at University Hospital Southampton, 43% of whom were over the age of 60. We know that older adults can often feel more shame and stigma related to their alcohol use compared with younger people. This can create barriers to accessing help with existing community addiction services. Beyond this, very little is known about the reasons why older adults drink alcohol and how this may interact with other social factors like loneliness and social isolation. Further research is needed to understand the ways in which to best support older adults to seek help, and what interventions may best promote positive outcomes. Study Design This study will recruit older people with alcohol use disorder (AUD) admitted to hospital in Wessex. A longitudinal observational design will be used, meaning that people in the study will be asked by the research team to complete questionnaires over time following admission into hospital. This will help to understand the needs of the population. There will be four main research aims: What are the personal characteristics of older adults with AUD? How do participants make sense of themselves in relation to their alcohol use? What happens to participants in the six months following a hospital admission? What factors what might prevent or encourage people from seeking help for their alcohol use? Study Methods The study will identify potential participants through the ACT in Southampton in the first instance. Around 40% of people seen over the age of 65 years. Clinicians working in ACTs have the skills and experience to sensitively identify and assess patients with comorbid alcohol use disorders Discussion about the study and consent processes will be undertaken by the UHS clinical trials officer. Participants who are willing to be part of the study will complete a set of questionnaires in hospital. Well-established measures of alcohol use, quality of life, loneliness, collective efficacy and health service use will be collected. Participants will be asked to complete similar questionnaires again at 3 and 6 months. This will probably take place over the phone. Health service use data will be collected for the 6 months after discharge to explore resource use. Plain English summary of findings Recruitment to the study was difficult. Many patients who were identified as drinking at increasing or possibly dependent levels did not have mental capacity to take part. Of those who were eligible, a large percentage declined to participate. This resulted in a small sample size of 30, 16 of which completed their follow-up questionnaire, and 7 interviews. 20% of the sample died during the study window. Results indicated: Over 50% participants showed some level of cognitive impairment Participants had an average of 4 people in their social network; usually family members Interviews revealed links between social isolation, loneliness and drinking alcohol Those who were housebound reported drinking alcohol all day long Participants stated alcohol is not, and never has been a problem for them 50% participants met the threshold for depression Participants often provided conflicting information for the follow-up questions and in the interviews Participants had poor diets; of 32 nutrients measured 22 were not consumed in-line with the government recommendations 93% participants were taking 5 medications or more What's next? As a small preliminary study the new knowledge has been used to inform future research. Impact on patient care and population health will come from the future research. Recruitment was harder than expected. This learning point has informed recruitment and retention procedures in future research applications. Other findings, for example, the link described qualitatively between social isolation and increased alcohol consumption, has shaped ideas for intervention development. We are preparing an application to undertake the planning and developmental work for an intervention aimed at reducing alcohol consumption in a general population of adults aged 65 and over. We plan to test the feasibility of this intervention in a feasibility study.

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

Research Fellow < Back Skaiste Linceviciute Research Fellow Long Term Conditions Skaiste Linceviciute is a Research Fellow at the ARC Wessex Mental Health Hub at the University of Southampton appointed to work on projects related to the Long-Term Conditions and Ageing and Dementia themes. Skaiste brings expertise as a qualitative researcher in areas on uncovering the challenges and unmet needs of people living with long-term physical and mental conditions as well as pursuing research on person-centered support systems. Skaiste is also the Mental Health Hub's Researcher Representative for the ARC Public Involvement Forum Wessex, working together with other contributors ensuring research meaningfully addresses community priorities and is guided by people with lived experience. Previous Next

4d75ba35-779f-4c29-9dd6-a4bbffb8ad71 Determining the effectiveness and outcomes of innovative interventions for people who have used stalking behaviours: An extension of the exploration of the Hampshire & Isle of Wight Multi-Agency Stalking Partnership (MASP) Chief Investigator: Dr Sara Afshar Morgan, Associate Professor of Public Health, Faculty of Medicine, University of Southampton Team: Mrs Katerina Porter, Senior Research Assistant, Faculty of Medicine, University of Southampton, Lisa Allam, Commissioning Manager, Hampshire & Isle of Wight Office of the Police & Crime Commissioner Dr Kirsty Butcher, Principal Clinical Psychologist & Clinical Lead, Multi-Agency Stalking Partnership, Hampshire and Isle of Wight NHS Foundation Trust Detective Chief Inspector Abigail Leeson, Hampshire & Isle of Wight Constabulary Dr Andrew Bates, Regional Forensic Psychologist, National Probation Service Rachel Windebank, Operations Director, STOP Domestic Abuse Partners: Hampshire and Isle of Wight NHS Foundation Trust, University of Southampton, Hampshire & Isle of Wight Office of the Police & Crime Commissioner, Hampshire & Isle of Wight Constabulary, National Probation Service, STOP Domestic Abuse. Start: 1 October 2024 End: 31 March 2026 Summary People often use the word ‘stalking’ to describe using social media to learn details about someone of interest. However, in law enforcement, the word ‘stalking’ is used to describe something much more serious: ‘fixated, obsessive, unwanted and repeated behaviour that makes [the survivor] feel pestered and harassed’, alarmed, distressed, or afraid. [1] In fact, the use of stalking behaviours can lead to serious violence; in a recent review of female deaths over 3 years, stalking behaviours were found to be present in 94% of cases [2] . People who use stalking behaviours often suffer from psychological inflexibility which causes them to fixate on particular individuals. Recently, psychologists have been using various psychological therapies to attempt to treat the obsessiveness that people who stalk suffer from. The use of these therapies has been evaluated in the short-term, with small groups. Results have been positive, but there is a need for longer-term follow-up of people who have used stalking behaviours, to determine whether psychological therapies are useful in helping people to stop stalking. This research study aims to explore the experiences of individuals who have used stalking behaviours, and who have completed a psychologist-led stalking intervention (PLSI), to learn whether participating in psychological therapies is useful in preventing further stalking. We will gather information by doing interviews with people who have completed a programme of psychological therapy to stop stalking. We will do up to 6 interviews with each person, over the course of one year, to understand their experiences. We will also obtain information from the Police to learn whether any of the individuals have been reported as using stalking behaviours, after having completed the psychological therapy. We will use this information to build a picture of the reasons why the psychological therapy might or might not work, in various cases, to prevent future stalking. We will compare the experiences of the people who have used stalking behaviours, with information from victim-survivors and professionals. There is already an evaluation and research study ongoing, to learn more about the use of these psychological therapies for stalking prevention. This study will be an extension of the existing study, to follow up existing research participants over a longer period of time. Longer-term follow-up of people who have used stalking behaviours is scarce. This original research will provide an important look into the experiences of people who have used stalking behaviours and completed psychological therapies to try to treat the underlying fixation. The ultimate goal of the psychological therapy is to prevent future violence. The results of the research will be fed back to all research partners directly (Hampshire & Isle of Wight Constabulary, Hampshire & Isle of Wight Office of the Police & Crime Commissioner, Southern Health NHS Foundation Trust, National Probation Service), as well as being submitted for publication. Results will also be presented in an easy-to-read format, for use by research partners to share with their potential clients (including people who have used stalking behaviours, and their victim-survivors).

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 Read all Mental Health Hub projects

c3f60ada-92b2-427a-992e-e9d18e00b011 ADOPTED: Mobility assessments in hospitalised older adults: study protocol for an e-survey of UK healthcare professionals PhD Candidate: Catherine Wharfe University of Portsmouth; Team: Maria Perissiou University of Portsmouth; Zoe Saynor University of Portsmouth; Jim Briggs University of Portsmouth; Carolina Gonçalves University of Portsmouth & University Hospitals Sussex NHS Foundation Trust Start : 1/11/2023 Ends: 1/05/2025 Abstract Hospitalisation in acute care poses a significant risk of adverse outcomes in older adults, including loss of functional independence, disability, and death. Research carried out in hospitalised older adults suggests functional mobility tools or scales can predict adverse events and care needs in this population, which facilitates prompt escalation of care and discharge planning procedures. As such, a need to develop a standardised methodology for assessing or measuring mobility has been recognised. However, the degree to which standardised mobility tools are routinely used, how data is collected, and/or which clinical assessment processes are utilised in hospitals across the UK is currently lacking. The aim of this national survey is to identify the current practice of mobility assessment in older adults admitted to NHS Trusts and Private Health Organisations, with a view to informing further research on a standardised approach or best practice guidelines to assessing or measuring mobility in hospitalised older adults.

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

8d1b2f3a-906f-4fe9-8d9a-bf4679c7d6ec COMPLETED: StOP UTI project: Strategies in older people's care settings to prevent infection Background Urinary tract infection is more common in older people living in care homes but can be difficult to recognise. This can lead to overuse of antibiotics and may result in antibiotic-resistant infection and hospital admission. We wanted to find out what can work in care homes to prevent and recognise UTI and what support care home staff need to enable safe care for all residents. What we did We reviewed evidence from a range of sources, including research studies and improvement projects. We also asked care home staff, residents, family carers and healthcare professionals about their experiences. We combined these experiences and ideas with the evidence we found from published literature to develop an understanding of what needs to happen in care homes for older people to prevent and recognise UTI. What we found out What difference will this make? UTI can be prevented by embedding prevention activities in care routines: ensuring residents are hydrated ensuring residents with recurrent UTI are managed actively with preventative treatment avoiding the use of urinary catheters wherever possible Unnecessary antibiotic use can be avoided by: involving the whole care team, resident and family in recognising UTI using active monitoring when there is uncertainty about UTI supporting care staff to develop the skills to accurately recognise UTI using tools that support decision-making and communication across the wider care team Safe care for each resident can be achieved when: care staff receive education that is contextualised to their role and helps them to prioritise and deliver person-centred care care home managers are committed to supporting the delivery of best practice commissioners and regulators promote UTI prevention and recognition as a priority area for care homes Why is this important? Our findings suggest ways that care home providers and policy makers can support the prevention and recognition of UTI in the care of older people living in care homes. A system-wide approach is vital to enable care home managers and their staff to prioritise UTI prevention and recognition as part of person-centred care. At policy level, there is a need to integrate UTI prevention with diagnostic and antimicrobial stewardship and to unify the content of education and decision-support resources so that care staff can see the value of their role in prevention as well as supporting diagnosis and treatment of UTI. What next? Our research is the start of a process of understanding what works in care home settings and will identify where further research is needed. A report, summary and articles provide practical examples and recommendations relevant to care home staff, care home managers, researchers, educators, carers and relatives for use to improve the prevention and recognition of UTI in older people’s long-term care and to plan further research to investigate them. We are turning our findings into a range of different resources and digital communications, with input from experts who support the adoption and spread of innovation, for sharing via care home networks and associations. Publications Realist synthesis protocol for understanding which strategies are effective to prevent urinary tract infection in older people in care homes Preventing urinary tract infection in older people living in care homes: the ‘StOP UTI’ realist synthesis | BMJ Quality & Safety Strategies for older people living in care homes to prevent urinary tract infection: the StOP UTI realist synthesis | NIHR Journals Library Link to University of Southampton site Research team: • Dr Jacqui Prieto, Joint Chief Investigator, University of Southampton • Professor Heather Loveday, Joint Chief Investigator, University of West London • Professor Jennie Wilson, Co-investigator, University of West London • Mrs Alison Tingle, Co-investigator, University of West London • Mrs Emily Cooper, Co-investigator, UK Health Security Agency • Dr Melanie Handley, Co-investigator, University of Hertfordshire • Professor Jo Rycroft-Malone, Co-investigator, University of Lancaster • Dr Lynne Williams, Co-investigator, Bangor University • Mrs Jennifer Bostock, Co-investigator, Patient and public involvement • Lois Woods, Information Specialist, University of Southampton • Simon Briscoe, Information Specialist, University of Exeter • Jemima Kakpa, Research assistant, University of Southampton • Christine Logan, Administrative assistant, University of West London Project Advisory Group: • Jennifer Bostock (Chair) • Professor Lona Mody • Mr Mark Stott • Dr Leah Jones • Mrs Susan Bennett • Mr James McMahon • Mrs Annabelle Stigwood • Mrs Anita Astles