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e468f3be-ad28-42e2-8ec5-7270d68258c8 ADOPTED: Treatment burden in people below the age of 65 with multimorbidity in primary care: A mixed methods (SPELL) Principal Investigator: Dr Rachel Johnson, University of Bristol Team: Prof Chris Salisbury, University of Bristol Prof Jose Valderas, University of Exteter Dr Simon Fraser, Univeristy of Southampton Dr Maria Panagioti, University of Manchester Dr Tom Blakeman, Univeristy of Manchester Dr Shoba Dawson, University of Bristol Dr Polly Duncan, University of Bristol Dr Michael Lawton, University of Bristol Start Date: 1 February 2022 End Date: 31 July 2024 Background One in two people over the age of 50 have more than one long term health condition (multimorbidity). The number of people living with multimorbidity is growing. Compared with people without multimorbidity, people with multimorbidity have worse quality of life, take more medicines, and are more likely to die or to be admitted to hospital. More people in deprived areas develop multimorbidity at a younger age. As a group, people with multimorbidity have more contacts with healthcare services than people with one or no long-term conditions. Because of this the NHS and policy-makers want to find ways to manage multimorbidity better. People with multimorbidity put a lot of effort to manage their medicines and healthcare appointments (treatment burden). There is some research that younger people experience more treatment burden. Previous research tells us that sometimes it is the simple things like getting appointments with the GP and finding parking that cause the most burden. Although people with multimorbidity are often grouped together, their experience depends on the health conditions they have, their ethnicity, where they live and their level of income. People with multimorbidity who are working age might have different problems such as getting time off work for appointments, managing their health conditions as work, or juggling childcare. This study will focus on people who are under the age of 65, as not much research has focused on them. A recent report by a charity for people with multimorbidity said that not much research has been done on how it feels for people to live with multimorbidity. Also, we do not know the best way to support and treat people with multimorbidity in GP services. If we understand people’s experiences, we might be able to design better services to meet their needs. There are some questionnaires that could be used to find people who be finding it difficult to cope with their multimorbidity burden, but they need more testing in the UK, particularly in younger people. Some questionnaires are too long, and it would be helpful to have a short version (e.g. just one question). This could be used regularly, as a quick way to identify people who might be ‘overburdened’ and need more support. We want to find out how health care services can support people with multimorbidity and reduce their treatment burden. We will do this in three ways: 1) interviewing people with multimorbidity, 2) ask people to complete questionnaires and 3) hold a meeting with people with multimorbidity, GPs and people who organise GP services, to talk about what we have found and work together to make recommendations to improve care. Throughout the study, we will work with the staff and patients at the GP surgeries involved to increase the number of people who take part. We will make efforts to reach and include people from minority ethnic groups and those who have difficulties in accessing health care. We will work with local community groups to raise awareness about this study and translate study materials into different languages. People with multimorbidity who take part in each part of the study will receive a voucher to thank them for taking part. In the first part of the study, we will ask GPs to find people with multimorbidity at their practice. We will invite some of those people to be interviewed, for up to 1 hour, either by phone, video or face to face. During the interview we will find out about their experience of living with multimorbidity, efforts they have to put into managing their health and treatment burden, and ways in which using health care services help or make it more difficult. We will use what we find in this study to help design the questionnaire that we will use in the second part of the study. In the second part of the study, we will ask GPs to invite randomly selected people from their practice. People who agree to take part will fill in questionnaires and give us permission to look at their medical notes. The questionnaires will ask about their experiences of care, how multimorbidity affects them, including the burden because of their health conditions or from managing them. As part of this we will test how well a short measure, based on a very small number of questions or even a single question, works in identifying overburdened people. In the third part of the study, we will hold a meeting with patients, people who organise healthcare services, and commissioners and healthcare professionals. During this meeting we will make sense of the results from interviews and questionnaires to identify how health services can support people with multimorbidity We will work together with people with multimorbidity or those with experience of caring for people with multimorbidity. The idea for this study came from a PPI group focused on multimorbidity research projects, with which both RJ and SC have been involved in for the past two years. We have set up a patient and public involvement (PPI) group including six people (two from minority ethnic groups). This group will be involved throughout the study from developing study materials to developing materials for sharing study findings.

c8454e17-14f6-4e3b-b8ba-8a5db14fcdcd Gambling and Alcohol Use Addiction in Military Veterans Chief Investigator: Professor Sam Chamberlain , Department of Psychiatry, Faculty of Medicine, University of Southampton; Sam.chamberlain@soton.ac.uk Co-Investigator: Dr Konstantinos Ioannidis , Department of Psychiatry, Faculty of Medicine, University of Southampton and Hampshire and Isle of Wight Healthcare NHS Foundation Trust [NHS]; k.ioannidis@soton.ac.uk Partners: Dorset Integrated Care Board, Hampshire and Isle of Wight Integrated Care Board, Hampshire and Isle of Wight NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, Southampton City Council, Health Innovation Wessex, CNWL NHS Trust, National NHS Gambling Clinic London, Avon and Wiltshire Partnership NHS Foundation Trust, South West NHS Gambling Service, Swansea University, Gambling in Armed Forces research group, Royal Navy, Southampton City Council, Stronger Communities, Southampton Armed Forces Covenant, Eling Royal British Legion branch, Southampton Voluntary Services, HIOWH NHS Armed Forces Network, The Society of St James, Parent Support Link. Start: 1 December 2024 End: 31 March 2026 Background to the research Military veterans face a number of challenges including being at elevated risk of Alcohol Use Disorder and Gambling Disorder, in comparison to the general population. In the Wessex region there are over 100,000 serving/retired military personnel, yet, our regional addiction services report levels of veteran personnel referrals below the expected numbers. Aims of the research Informed by extensive stakeholder consultation with regional addiction services, a need has emerged to carry out explorative research and community partnership building on understanding the extent of engagement in accessing treatment and formal support for gambling and/or alcohol problems for military veterans and learn how this knowledge can enable improvement . Design and methods used This research will consist of one-to-one interviews with military veterans and multiple stakeholder workshops with key multidisciplinary partners and collaborators. Both work packages (WPs) will utilise robust methodological approaches and will build on findings from interviews, PPIE input and views of wider stakeholders. Patient, public and community involvement Public and service user representation is an embodied element throughout this study that will guide decision making and will support multidisciplinary partnership building in the wider community. The PPIE group will consist of members with experience in gambling and/or alcohol use disorders to ensure that research activities and recommendations for the improvement in support pathways reflect the needs of those affected in local communities. Dissemination By identifying common thematic experiences of military veterans affected by gambling and/or alcohol use, and conducting a series of collaborative stakeholder workshops, a consensus set of recommendations will be constructed. This new knowledge will be mobilised amongst key Wessex region stakeholders (e.g. VCSE, military NHS pathways, regional NHS treatment services for gambling disorder) that will enable knowledge identification and exchange, both of which are necessary for informing the planning of further work in this area.

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

d7cea2fb-fab3-4e8d-86f6-e2d2952f0404 ADOPTED: Nurture-U (Southampton): A longitudinal survey for student metal health and wellbeing Principal Investigator: Lucy Dorey Start Date: 1 July 2021 End Date: 1 July 2025 Background: Promoting good mental health within university students is a priority. Anxiety, depression and self-harm are rapidly increasing. University mental health services report demand beyond their capacity. Effective ways to prevent student mental difficulties are urgently needed. Further, university should be a positive life experience and promote students' emotional fitness and ability to thrive. Research and student feedback recommend changing university culture, environment and teaching to promote wellbeing. Stepped care in which students move through different steps based on need is also suggested to improve student wellbeing and service capacity. This starts with wellbeing promotion and prevention for all students, steps up to self-help for those with mild symptoms and to professional support for those with elevated symptoms. However, these approaches have not been rigorously tested in universities. We don't know which elements best promote good student mental health. We don't know what approaches work best for the diverse student body across gender, ethnicity, sexuality, sociodemographic background. We will test initiatives within the university environment and at each of the steps, see which initiatives students use, how well they work, and identify which work best for which students across diverse groups. Students will be active partners in shaping, delivering and evaluating all research. We will use repeated twice-yearly online surveys across 6 universities (110k undergraduates) to assess student wellbeing and mental health and understand what helps or hinders students seeking and getting help. A digital self-monitoring tool allows students to track their wellbeing, stress, and what support they use over time so we can map how they move through stepped care and how different steps interact with each other. To test whether changing university environment promotes wellbeing, first we will evaluate embedding compassion into education: teaching about diversity and mental health, practising kindness and understanding for self and others, and making assessment more flexible and responsive to students. Focus groups will explore how students experience this approach. Second, we will introduce a voluntary online mental health literacy course for first year undergraduates that teaches what influences mental health, how to promote wellbeing and how to seek help. Surveys before and after the course will test if it increases students' knowledge, healthy behaviours, helps-seeking and wellbeing. To better understand how to make self-help work for students, randomised trials will test book-based guided self-help to build personal strengths, unguided digital self-help to prevent depression in high-worrying students and digital self-help for depression and anxiety. We will compare supported versus unsupported digital cognitive-behavioural therapy, meditation and peer support apps to find out which app(s) students find most acceptable and explore which students most benefit from. We will test self-help with and without support because unsupported self-help can reach vastly more people and there is uncertainty about whether and for whom supported self-help is more effective. To improve the efficiency of student mental health services, we will test if adding a digital self-monitoring tool shared between student and clinician improves student experience and time to recovery by enabling care to be more proactive and responsive (e.g., more frequent meetings if symptoms rise). From this research, we will develop an evidence-based integrated model of inclusive and acceptable student wellbeing and mental health support. In partnership with students and university leaders, this model will inform policy recommendations. We will develop guidance, courses and tools to promote student wellbeing that are easily added to existing systems or that use tried-and-tested low-cost technology to ease their adoption and ongoing use.

dc3e8b34-4159-44f6-a95e-c9d11121781c ADOPTED: Mapping pathways of response for adult and child victim-survivors of domestic abuse in Southampton City Team: Dr Sara Morgan, Associate Professor School of Primary Care, Population Sciences, and Medical Education Faculty of Medicine, University of Southampton Mrs Katerina Porter, Senior Research Assistant, Faculty of Medicine, University of Southampton Dr Eunice Aroyewun, Senior Research Assistant at the School of primary care, population science and medical education, University of Southampton Supervisor: Professor Julie Parkes, School of Primary Care, Population Sciences, and Medical Education Faculty of Medicine, University of Southampton The aim of the evaluation is to map the pathways by which victim-survivors are referred for, and receive, support for domestic abuse situations, from the Council and its partners. There are several processes to which victim-survivors can be referred in Southampton City: PIPPA and HRDA. PIPPA stands for the Prevention, Intervention, & Public Protection Alliance, and is the referral and support process for domestic abuse cases that have been assessed as standard- or medium-risk. PIPPA is a group of services working together to end domestic and sexual violence in Southampton, and comprises the following agencies: STOP Domestic Abuse Yellow Door Southampton City Council’s Independent Domestic Violence Advisor (IDVA) Service Hampton Trust South Hampshire Women’s Refuge No Limits HRDA stands for the High-Risk Domestic Abuse (process), and is the referral and support process for domestic abuse cases that have been assessed as high-risk. The process begins when someone makes the decision to refer a victim-survivor of domestic abuse to Southampton City Council, for support. The referrer could be from the Police, or Council team member from Adult Safeguarding, Children’s Services, Substance Abuse, Housing, or a member of the public, including the victim-survivor themselves. At this point, the referrer must use the DASH (Domestic Abuse, Stalking, & Honour-based violence) checklist tool to assess the risk of the domestic violence situation ( https://www.dashriskchecklist.co.uk/ , accessed 26/02/23). This tool was developed by the Association of Chief Police Officers (ACPO) and Laura Richards, in conjunction with SafeLives (formerly Coordinated Action Against Domestic Abuse (CAADA). Southampton City Council currently use a 24-question DASH checklist. The number of risk indicators (0-24) which are identified on the completed DASH suggest at which risk level the case should be assessed. The levels of risk are based on the Offender Assessment System (OASys), developed by the Prison and Probation Services definitions of what constitutes standard, medium, and high risk. For futher information email the team

Nestor Serrano-Fuentes RN, PhD student and Research assistant for the Long-Term Conditions Research Group, Health Sciences, University of Southampton < Back Traveling back in time: exploring the Netley Red Cross Hospital during World War I Nestor Serrano-Fuentes Nestor Serrano-Fuentes RN, PhD student and Research assistant for the Long-Term Conditions Research Group, Health Sciences, University of Southampton November is remembered as the month in which the First World War ended; a time to remember our loved ones who fell in battle. Between 1914 and 1918, many stories unfolded: stories of life, death, love, births, feelings and emotions. Those feelings flourish today when walking through the green park and woodland at Netley on the Southampton shoreline. I look at the sea, that little orange chapel in the middle of the great esplanade, I close my eyes and visualise the protagonists of this story, talking among themselves, laughing, shouting, touching and hugging… My name is Nestor, I am a young man, nurse and researcher at the University of Southampton. Two years ago, while running on a cold winter morning along the south coast at Netley, something drew my attention. What was a lonely chapel doing here? I stopped to read some information panels and discovered that, in that place had been the Netley Hospital or Royal Victoria Hospital. According to some books, this was the largest British military hospital of all time. Furthermore, with the arrival of the war-wounded its capacity grew yet further Leading to the building of the British Red Cross Hospital just behind the main building and the recruitment of volunteers in the UK and overseas. Netley Hospital in 1918 Sister Harvey and some of the patients from 41 Hut A Japanese nurse who worked at Netley in 1918 - unnamed I needed more information and began to browse the historical archives online. Later I came across a treasure; The Netley British Red Cross Magazine . It was December and I was combing the historical archives in Winchester and there in my hands were prints of those magazines from 1918. They were filled with poems written by soldiers and nurses, cartoons, real photos and countless stories told in the first person. A few days later, I phoned my friend Elena Andina, lecturer of nursing at the University of Leon (Spain). She is a dreamer, humanist, and a person with whom I share a passion for the history of the nursing profession. I said: “You’re not going to believe what I have found! We’ve got some work to do!” We decided to read those six issues of the magazine. We were filled with great affection for the people and stories. We set about starting to analyse and contextualise the data and information, and began to write an article on the history of nursing telling the story of how care was delivered to soldiers during World War I. We were so lucky, it was like travelling in a time machine, an incomparable feeling. After a first analysis, we realised that there was a relationship between what was happening at Netley and the revolutionary thinking and ideas of Florence Nightingale, who is considered the creator of modern nursing. The focus on the environment on care - sunlight, humidity, fresh air, silence during a night shift, empathy, the smallest details that nurses took care of, such as the size of pyjamas for their patients, the use of small boats as a source of leisure for patients and nurses, are just some of the aspects that we glimpsed between those pages. Throughout history, wars and pandemics have shaped and changed the way nursing care has been delivered. If we look back, many of the measures that were applied we continue to use today. During this covid19 pandemic, the importance of open spaces and physical spaces between people, fresh air or sunlight are the same – echoes of the voices speaking from the pages of the Netley magazines in 1918. They say history tends to repeat itself, for better or for worse. What can we learn from it? Let us continue to lovingly preserve it and keep it in mind to acknowledge our ancestors and as inspiration in the search for current and future answers. Nestor Exploring The Netley British Red Cross Magazine: An example of the development of nursing and patient care during the First World War - Nestor Serrano-Fuentes& Elena Andina-Diaz (download below) serranoandina_2020_netley-hospital .pdf Download PDF • 768KB Elena Andina-Diaz - co-researcher Previous Next

93e2e1bd-cd98-479a-93a0-a105e734b0c3 ADOPTED: Exploratory research to examine the health impact of scams and fraud and the current knowledge and systems in the police and partner agencies for targeting and delivering victim support services Lead research ers: Ms Ruth Halkon and Dr Michael Skidmore, The Police Foundation; Professor Mark Button, Director of the Centre for Cybercrime and Economic Crime, University of Portsmouth; Dr Amy Meenaghan, School of Criminology and Criminal Justice, University of Portsmouth. Aims We aim to help the police find those who are most likely to suffer the worst damage to their mental and physical health from falling victim to fraud and make sure they receive the support they need to prevent that damage happening. Background Fraud is the most common and fastest growing crime in England and Wales. Many people do not report fraud and those who do often don’t receive help to reduce the crime's impact on their wellbeing. People affected by fraud can suffer serious physical and mental health problems which can lead to poor physical health, anxiety, depression and suicide. Many factors can shape how victims are affected: stress caused by losing what to them are big sums of money feeling betrayed by someone they thought was their friend or partner blaming themselves feeling friends, family and service providers do not understand them struggling to recover due to existing social or health needs. The police know less about the needs of fraud victims than victims of other crimes like domestic abuse. They are under pressure to improve the service they offer but there are many gaps: Fraud is common crime and can affect victims in many ways, which hinders finding victims who need the most support Those police think are most likely to be harmed, known as ‘vulnerable’, may not suffer the worst effects It is not clear what being 'vulnerable' in a crime context actually means Current systems to address 'vulnerability' mainly focus on cutting crime rather than victim health Research by Which? suggests the impact of fraud on victims' wellbeing amounts to £9.3bn, but we need more data Design and methods Our research will focus on two police forces who work jointly to provide support to victims which is widely seen as the best in the country. The project will focus on their systems, data and services to measure their success and produce a case study for understanding and addressing fraud's health impacts. This will be done via: Reading research papers to find out more about fraud victim impact, vulnerability and victim needs Looking at police and health and welfare data to learn about health impacts of different fraud types Talking to those working for the police, social services, victim support services and key health services Interviews with national subject matter experts Interviews with fraud victims who have been given support after fraud impacted their health to learn how this helped them Patient and public involvement Our overall aim is to involve fraud victims in finding a support framework that works for them Dissemination The report will be launched at an event and published on the Police Foundation website. It will be promoted on our blog, newsletter and social media channels. This fact finding project is a first step to creating a new framework that will be used to find those who need the most help to stop their mental and physical health being badly hit and make sure they are given it. The future project would involve: Organising roundtable events with people Bringing police, health and welfare services together to trial the framework Sharing findings and learning points across the country

18fd758f-b147-4294-acb1-07c88dc1baa9 PUNDIT – Predicting hospital Usage Numbers via a DIgital Twin Principal Investigator: Dr Carlos Lamas-Fernandez , Associate Professor in Business Analytics/ Management Science in Southampton Business School / Faculty of Social Sciences, University of Southampton. Team : Professor Christine Currie , School of Mathematics, Faculty of Social Sciences, University of Southampton. Dr Dan Burns , Innovation Centre, Electronics & Computer Science, University of Southampton. Dr Chris Duckworth , Innovation Centre, Electronics & Computer Science, University of Southampton. Professor Michael Boniface , I nnovation Centre, Electronics & Computer Science, University of Southampton. Professor Peter Griffiths , School of Health Sciences, University of Southampton. Dr Mark Wright , University Hospital Southampton NHS Foundation Trust. Starts: 1 April, 2024 Ends : 30 September 2024 Summary Hospitals in the UK are in crisis with high levels of occupancy. The percentage of occupancy in England during July-September was 88%, and in UHS it reached 92.2% . These levels exceed the safety threshold for hospital occupancy, which sits at around 85%. Together with difficulties to ensure a smooth patient flow across the hospital, this results in adverse effects for patients: elongated hospital stays, increasing the backlog of elective procedures, increasing delays in ambulance handovers and increased mortality. In practice, hospitals try and control high occupancy levels by certain interventions, such as dedicated discharge teams, re-scheduling or cancelling elective procedures or repurposing hospital wards. These measures, however, are reactive, i.e. when the occupancy is already reaching unsafe levels, rather than proactive, that is, when anticipating a high occupancy in the near future. Further, it is not clear whether occupancy levels have an effect on treatment and discharge times, but from frontline clinicians at UHS, there is the hypothesis that higher occupancy could make them longer (as clinicians are busier prioritising the sick over the well patients who could go home), compounding the occupancy issues. Higher occupancy also decreases likelihood of patients being in the optimal location. A related research project (PROCED) has shown early evidence that frequent ward/team changes increase delays in patient discharge. The aim of this project is to investigate the feasibility and build the foundations of a simulation model that can predict accurately future, short-term, hospital bed occupancy to inform interventions. The project will have a special focus on investigating the feasibility of a model to be tailored to use in practice as a “Digital Twin” (DT), which can anticipate hospital occupancy under different scenarios, some of which can reflect proposed interventions.

Our partners At NIHR ARC Wessex we are a collaboration of organisations working together to carry out the most relevant and best quality health and care research with real-life impact. Hampshire and Isle of Wight Integrated Care System (ICS) Dorset Integrated Care System (Our Dorset) ! Widget Didn’t Load Check your internet and refresh this page. If that doesn’t work, contact us.

Buy-in and Engagement Project Outputs Buy-in and Engagement Fit with Health and Social Care Systems Alignment with Health and Social Care Priorities Outcomes and Impact Adoption and Spread Checklist, webinar and resources Quick links: Project Outputs This domain helps you consider who needs to be engaged as part of the implementation process, what routes to engagement to use and how engagement will be maintained during implementation. No FAQs yet This category doesn't have any FAQs at the moment. Check back later or explore other categories. What should I consider for my project? Adoption and Spread Project Outputs Buy-in and Engagement Fit with Health and Social Care Systems Alignment with Health and Social Care Priorities Outcomes and Impact Case study “From the start, we decided it was important to use our current networks and involve key people who had established credibility and who were trusted . The commitment and drive for the project by the lead ensured others readily identified its value and were prepared to engage and commit to see the project to realisation. We involved our Communications Team at this early stage and provided regular updates both internally and to partner organisations so that they were aware and felt involved in the project. We continued to recruit key people from partner organisations so that they would spread the message and obtain buy-in within their organisations. Our stakeholder group established a clear plan, including ensuring we considered all governance processes and decisions were actioned. We also identified early on who our ‘anti-champions’ were and discussed how we would manage their resistance or if they attempted to derail implementation. It was a massive team effort that required time and input from all involved. We also confirmed our organisation was fully committed to adoption and this enabled us to show that the intervention was commissioned. This resulted in other organisations having reassurance and confidence to engage and not having to ‘take a risk’ and be the first to sign up. ” Drive Partnership Working Project (DPWP) Take away tips Buy-in and engagement is integral and should be considered at the start and throughout implementation Engagement is necessary at all levels and must be sustained

16c59677-d7b2-4332-b74a-b4b17ed064ed COMPLETED: How to Support children with cancer, or another serious condition, and their parents during the COVID-19 outbreak How to Support cHildren with cAncer, or another serious condition, and theiR parents during the COVID-19 outbreak?: understanding Experiences, information and support needs, and decision-making – the SHARE study Research team Chief Investigators: Professor Anne-Sophie Darlington- Professor of Child and Family Psychological Health- University of Southampton Dr Bob Philips- Senior Lecturer and Honorary Consultant in Paediatric / Teenage-Young Adult Oncology-The Leeds Teaching Hospital NHS Trust Dr Jess Morgan- Senior Research Fellow & Paediatric Oncology Trainee- University of York Mr Ashley Ball-Gamble- CEO of Children’s Cancer and Leukaemia Group (CCLG)- CCLG Project team members: Dr Nicole Collaço- Research Fellow- University of Southampton Dr Luise Marino- Clinical Academic Paediatric Dietitian- University Hospital Southampton Dr Arvind Nagra- Paediatric Nephrologist- University Hospital Southampton PPI group Organisations involved: University of York, Children’s Cancer and Leukaemia Group, University of Southampton, University Hospital Southampton, The Leeds Teaching Hospital NHS Trust, Kidney Research UK, Kidney Care UK, British Heart Foundation, Children’s Heart Foundation ,Cystic Fibrosis Trust, Together for Short Lives, The Martin House Research Centre, Harry’s Hat, Shine. Summary Children and young people with cancer may be particularly vulnerable. Those undergoing treatment have a weakened immune system, meaning they will find it more difficult to fight infections. [1] Comprehensive advice for parents has been compiled by experts and disseminated through the UKs Children’s Cancer and Leukaemia Group (CCLG).[1] However, we urgently need to increase our understanding of evolving experiences, information needs and decision-making of these families under these extraordinarily stressful circumstances. Only through investigating parents’/main carers’ experiences and needs will we be able to tailor and provide the right support, in terms of guidance, information updates, and online interventions to reduce distress and anxiety. What did we find out? We found that the impact of COVID-19 on different populations shared some common experiences: Disruption to healthcare services- all populations faced challenges due to disruptions in healthcare services which affected access to necessary medical care and treatments Increased anxiety and stress- COVID-19 brought about increased anxiety and stress levels in all populations, particularly amongst caregivers who had specific concerns about their child’s health and safety Limited social interactions- the pandemic led to limited social interactions for all populations, resulting in feelings of isolation and loneliness Social support networks: families in general faced amplified challenges due to limited social support networks, emphasizing the importance of community resources in managing the pandemic’s effects. Reassurance gained that certain populations may not be at significantly higher risk of adverse outcomes or psychological distress. Findings emphasised the need for tailored support services, clear communication, education and psychological support to address challenges faced by these populations during the COVID-19 pandemic. What difference will this make? Insights provided valuable information for healthcare providers and relevant charities organisations to make informed decisions about how to support people and allocate resources effectively. In addition the information can be used to develop targeted strategies and interventions that address the specific challenges faced by different populations such as disruption to healthcare services, increased anxiety and stress and limited social interactions. By understanding the impact of COVID-19 on various populations, policies can be developed to address the specific needs and concerns of different groups. Findings emphasised the importance of prioritising clear communication, education and psychological support to ensure the wellbeing of these populations. Why is this important for patients, health and care providers and policy makers? Patient care: understanding the impact of COVID-19 on different populations helps healthcare providers tailor their services to meet specific needs; including ensuring access to healthcare services, managing increased anxiety and stress and providing psychological support. Health & Care Providers: the findings provide valuable insights for healthcare providers to address the challenges faced by different populations. This includes adapting healthcare services, clear communication and providing education to effectively support patients. Policymakers: Knowledge of the impact of COVID-19 on various population helps policymakers make informed decisions, including allocating resources, developing tailored support services, and implementing policies to address the specific needs of different populations. Research outputs: COVID-19: experiences of lockdown and support needs in children and young adults with kidney conditions Yincent Tse, Anne-Sophie E. Darlington, Kay Tyerman, Dean Wallace, Tanya Pankhurst, Sofia Chantziara, David Culliford, Alejandra Recio-Saucedo & Arvind Nagra COVID‐19 and children with cancer: Parents’ experiences, anxieties and support needs Anne‐Sophie E. Darlington, Jessica E. Morgan, Richard Wagland, Samantha C. Sodergren, David Culliford, Ashley Gamble, Bob Phillips https://onlinelibrary.wiley.com/doi/full/10.1002/pbc.28790 https://journals.sagepub.com/doi/full/10.1177/21501351211007102 https://link.springer.com/article/10.1007/s00467-021-05041-8 https://onlinelibrary.wiley.com/doi/full/10.1002/ppul.25537 https://onlinelibrary.wiley.com/doi/pdf/10.1111/apa.16229 https://link.springer.com/article/10.1007/s00381-023-05980-7 https://adc.bmj.com/content/108/3/198.abstract https://www.thesun.co.uk/news/11968084/coronation-street-mitochondrial-disease/ https://www.togetherforshortlives.org.uk/forgotten-families-families-feel-more-isolated-than-ever-under-lockdown/ https://www.southampton.ac.uk/news/2021/04/share-study-results.page https://www.ncri.org.uk/areas-of-interest/cancer-covid-19/ 11-share-study | Institute for Life Sciences | University of Southampton Life Sciences Annual Reports | Institute for Life Sciences | University of Southampton Conferences/presentations: SIOP (International Society of Pediatric Oncology)- E-poster discussion (2021) Royal College of pediatrics and child health- poster presentation (2021) 53rd ESPN Annual Meeting- oral presentation (2021) 7th King John Price pediatric respiratory conference- poster presentation (2021) Webinar- Nutricia- What's next for improving nutrition & growth outcomes in infants with congenital heart disease? (2021) Webinar- University of Surrey: Impact of Covid-19 on families: a focus on new parents, children, and people with learning disabilities, with reflections from professional practice (2021) Webinar: Pediatric Oncology Educational meetings (2021) Webinar: European Paediatric Psychology Network (EPPN) – background and mission (2020)

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