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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

Research Fellow < Back Laila Khawaja Research Fellow Long Term Conditions Dr. Laila Khawaja holds a PhD in Social Sciences from the University of Southampton and is an experienced qualitative researcher with a strong background in public health, well-being, and social engagement. She has worked extensively on projects that explore the intersection of mental health, agency, and lifestyle behaviors, particularly among young people. Laila was involved in a National Institute for Health and Care Research (NIHR) project that focused on empowering young individuals to enhance their sense of agency and well-being. This work aimed to positively influence their mental health, dietary choices, and physical activity habits through participatory engagement strategies. Currently, Laila is contributing to the Applied Research Collaboration (ARC) Wessex Long-Term Conditions theme, where she is actively engaged in two key projects: the SCALE project, which examines enablers and barriers of using a long term conditions-scale tool and a study on Social Prescribing for Link Workers , which investigates how healthcare professionals can better connect individuals to community-based resources to improve well-being and health outcomes. Her research interests include health inequalities, patient and public involvement in healthcare, and the role of social interventions in managing long-term conditions. Previous Next

532de301-847c-4966-bc5a-4870a7af237f COMPLETED: COVID-19 Emergency Department Project NIHR ARC Wessex is supporting this research Summary The COVID-19 pandemic created an unprecedented demand for acute care services. Hospitals faced the challenge of needing to rapidly restructure care pathways and resourcing priorities to maximise survival rates for critically ill patients. University Hospital Southampton (UHS) needed evidence-based tools to support clinical and resource planning decisions in response to the pandemic. COVID-19-ED was able to provide rapid response insight to analytics questions provided by UHS. Who worked on the project? Professor Michael Boniface – University of Southampton Dr Hang Phan – University of Southampton Dr Francis Chmiel – University of Southampton Dr Daniel Burns – University of Southampton Professor Ben MacArthur – University of Southampton Professor Dave Woods – University of Southampton Dr Derek Sandeman – University Hospital Southampton NHS Foundation Trust Dr Thomas Daniels – University Hospital Southampton NHS Foundation Trust Dr Michael Kiuber – University Hospital Southampton NHS Foundation Trust Neil Tape – University Hospital Southampton NHS Foundation Trust Martin Azor – University Hospital Southampton NHS Foundation Trust Dr Matthew Stammers – University of Southampton NHS Foundation Trust What did we find out? We found that computational models of COVID-19 epidemiology could be used to help forecast COVID-19 hospital demand and support the University Hospital Southampton (UHSFT) in their response to the pandemic. We learnt how to deliver a series of models and insight throughout the phases of the pandemic first wave (alert, pre-peak, post-peak, recovery). We learnt to adapt approaches through experimentation and as new information became available to the research team: Initially a 10-day rapid response was required balancing timeliness and precision of answers. Little was known about COVID-19 and a simple approach was developed to forecast the time and size of the first peak. We then extended the model to consider actual hospital data along with the prevalence of infected people in communities and occupancy types such as general or intensive care beds. Finally, the impact of social distancing was incorporated to modify community transmission rates allowing UHS to run what if scenarios considering future assumptions about social distancing policies from the UK government. What difference did it make? COVID-19-ED provided a source of rapid insight response for UHSFT operations teams at a time when they had little information to plan resources. Why was it so important? Community disease prevalence modelling is an important tool to support capacity planning and resource planning for integrated care systems. Vital to provide rapid insights with limited information and changing disease and policy situations. What happened next? The knowledge gained about COVID-19 epidemic modelling led to UK wider leadership of data analytics for Dr Dan Burns in the COVID-19 Regulator Testing Programme Kidd, S.P., Burns, D., Armson, B., Beggs, A.D., Howson, E.L., Williams, A., Snell, G., Wise, E.L., Goring, A., Vincent-Mistiaen, Z. and Grippon, S., 2022. Reverse-transcription loop-mediated isothermal amplification has high accuracy for detecting severe acute respiratory syndrome coronavirus 2 in saliva and nasopharyngeal/oropharyngeal swabs from asymptomatic and symptomatic individuals. The Journal of Molecular Diagnostics, 24(4), pp.320-336. Ptasinska, A., Whalley, C., Bosworth, A., Poxon, C., Bryer, C., Machin, N., Grippon, S., Wise, E.L., Armson, B., Howson, E.L. and Goring, A., 2021. Diagnostic accuracy of loop-mediated isothermal amplification coupled to nanopore sequencing (LamPORE) for the detection of SARS-CoV-2 infection at scale in symptomatic and asymptomatic populations. Clinical microbiology and infection, 27(9), pp.1348-e1. Rapid analytics support to NHSE Chief Scientific Officer’s (NHSE CSO) team including: Statistical validation of the PCR technology for Project Jupiter in Leamington Spa, which now covers 300,000 PCR tests a day of the UK’s Pillar 2 testing infrastructure Development of a calculator tool for TVG which will be used to validate several COVID-19 testing technologies Research design for laboratory validation studies Publications https://doi.org/10.1038/s41598-021-02481-y

< Back This is a Title 03 This is placeholder text. To change this content, double-click on the element and click Change Content. This is placeholder text. To change this content, double-click on the element and click Change Content. Want to view and manage all your collections? Click on the Content Manager button in the Add panel on the left. Here, you can make changes to your content, add new fields, create dynamic pages and more. You can create as many collections as you need. Your collection is already set up for you with fields and content. Add your own, or import content from a CSV file. Add fields for any type of content you want to display, such as rich text, images, videos and more. You can also collect and store information from your site visitors using input elements like custom forms and fields. Be sure to click Sync after making changes in a collection, so visitors can see your newest content on your live site. Preview your site to check that all your elements are displaying content from the right collection fields. Previous Next

e57a4343-00e9-4e08-9056-d084e47c8870 Reframing responsibility through public empowerment: proposing the ‘FoodEnviroScan’ app to unmask unfair environmental cues influencing poor diets Team Dr Nestor Serrano-Fuentes. Senior Research Fellow. School of Health Sciences, University of Southampton. Dr Lyn Ellett. Associate Professor of Clinical Psychology. School of Psychology. University of Southampton. Prof Mari Carmen Portillo. Professor of Long-Term Conditions. School of Health Sciences University of Southampton. Prof Janis Baird. Professor of Public Health and Epidemiology, MRC Lifecourse Epidemiology Centre, University of Southampton. Prof Christina Vogel. Deputy Director, Centre for Food Policy City, University of London. Partners Peter Rhodes (potential support). Senior Programme Manager, Industry and Innovations (AHSN). Jessica Berry (potential support). Personalised Care Programme (ICS). Dr Alexandra Mant (potential support). Institute for Life Sciences Collaboration Manager at the University of Southampton. Dr Lindsay Welch. Clinical associate professor at the University of Bournemouth. Previous Program Lead Health Inequalities (Health Innovation Wessex) Starts: 27th February 2023 Ends: 30th September 2024 Summary Our cities have changed a lot since the 1960s. One of the biggest changes is that there are now a lot more places to buy unhealthy fast food and sugary drinks, like takeaway shops. The food and drink companies have also used clever marketing strategies so we buy more of their products. Some of their strategies are hard to spot, but they have impacted people living in poorer areas the most. For example, these people might see a lot more ads and deals for fast food and junk food around where they live and work. Research shows that the best way to improve our diets is to have stronger rules for how the food industry is allowed to advertise to us. But currently there are not many policies like this. And there is not much public support for stronger rules either. That is because many people still think it's up to them alone to eat healthily. We want to talk to the public to discuss how we can get more public attention on the power big food companies have. We also want to talk about what else we as a society can do to put more pressure on the food industry to change. We are also interested in whether new technologies could help with these goals.

< Back This is a Title 02 This is placeholder text. To change this content, double-click on the element and click Change Content. This is placeholder text. To change this content, double-click on the element and click Change Content. Want to view and manage all your collections? Click on the Content Manager button in the Add panel on the left. Here, you can make changes to your content, add new fields, create dynamic pages and more. You can create as many collections as you need. Your collection is already set up for you with fields and content. Add your own, or import content from a CSV file. Add fields for any type of content you want to display, such as rich text, images, videos and more. You can also collect and store information from your site visitors using input elements like custom forms and fields. Be sure to click Sync after making changes in a collection, so visitors can see your newest content on your live site. Preview your site to check that all your elements are displaying content from the right collection fields. Previous Next

1c23cf8b-3886-4a98-9ca5-1588bcdda392 ADOPTED PROJECT: Development of a decision aid for offloading device selection for people with diabetic foot ulceration ADOPTED PROJECT: Development of a decision aid for offloading device selection for people with diabetic foot ulceration Principal Investigator: Dr Lindsey Cherry , Associate Professor University of Southampton Research team: Dr Emma Cowley, University of Southampton; Dr Michael Backhouse, Associate Professor, University of Warwick; Dr Kate Lippiet, University of Southampton & Wessex Cancer Alliance Partners: University of Southampton & Solent NHS Trust, University of Warwick & Wessex Cancer Alliance Lay Summary: We aim to create a visual tool, called a decision aid (DA). A DA shows the good and bad points for different treatment options. A DA can help people choose the best treatment for them. Helping people choose their treatment can make them healthier and happier in the longer term. We also aim to find out what is needed to support clinicians to use the DA.Treatments to help diabetic foot ulcers (DFUs) heal include a plaster cast or removeable boot. Both treatments have good and bad points. For example, we know casts tend to heal DFUs faster than boots, but you cannot drive with them. People can drive with a boot. Driving may be a priority for some people, to collect children or get to work, but healing quickly could be a priority for others. Aim: To develop a shared decision aid (DA) for offloading device selection for people with diabetic foot ulceration; A secondary aim is to explore workforce willingness, confidence, and competence to use DAs and shared decision-making. Methods: Two parallel workstreams (WS) will be completed. WS1 DA development will be undertaken in accordance with the International Patient Decision Aid Standards. The DA will likely contain information about a) the decision to be made, b) option risks and benefits, c) related values and d) decision next steps. WS2 Workforce readiness will be evaluated through a) scoping literature review, b) national workforce survey, and c) stakeholder focus group about workforce capability development, training needs, and implementation recommendations. Expected outcomes: WS1 will produce a decision aid and the consolidation and generation of new partnerships ready for full trial evaluation. WS2 will identify priority areas to support workforce implementation of shared decision-making and DAs. This programme addresses multiple JLA priorities including PSP1, PSP2, PSP5 and PSP9. Additional benefits include research capacity growth in PSP areas through subsequent national multi-centre trial, with routes to support Advanced Clinical Practice and an embedded PhD studentship.

Project Outputs Project Outputs This domain helps you consider the deliverables or what is to be produced as a result of your project. These are the project outputs . Outputs can be singular or multiple and include any of the following: policy guideline(s), innovation, intervention, website or a tool. 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 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: Case study “ As we had early discussions t o identify our project outputs within our team, we were able to plan resources required to support this. For example, we knew that one of our key outputs would be a website to be made freely available to all. However, as we engaged with our wider networks of stake holders across d ifferent care homes, we realised that some also expressed interest in having a printed training resource which they could share with colleagues when hosting in-person workshops . This presented a challenge initially as we had not costed for the development of these printed materials. However, as we were still at an early stage of the project, we were able to apply for a small grant which helped accommodate these costs. Stakeholder involvement was invaluable to ensuring that our project outputs matched their needs . We will take this learning forward in future projects and consult with a range of stakeholders initially. This will help to support our project outputs to be available and accessible in formats which best fit the needs of those using them.” Person-centred care training resource for care homes project (PCCP) Take away tips Early engagement with stakeholders about what project outputs are helpful for them can enhance their longer-term value and utility Early engagement also ensures that resources can be prioritised and financially supported

Sandra Bartolomeu Pires is a Research Sister in Neurodegenerative diseases at University Hospital Southampton and PhD Candidate at the University of Southampton < Back Don't do it! Sandra Bartolomeu Pires Sandra Bartolomeu Pires is a Research Sister in Neurodegenerative diseases at University Hospital Southampton and PhD Candidate at the University of Southampton From 2018 to 2020 I cowboyed through fellowships and awards, trying to keep a percentage of my time academically focused, in pursuit of the Holy Grail – PhD funding. These varied from 9% to 50% with interim periods of zero (keeping the work going, though). “I just need some funding, my foot in, then I will make it work”. In September 2020, alleluia, PhD scholarship secured! I made a happy dance while holding my 3-year-old daughter and she laughed loudly without understanding why mummy was making such a fuss over a phone call (now that I think about it, she was probably just mocking my lack of dance skills…). I couldn’t believe it. Starting September I would be a PhD student at the University of Southampton! “So how does that work Sandra?”. Well, I get 50% of my time funded to do the PhD. I have funding for four years. “So you need to do a part-time PhD in four years, with a toddler, no family support... (*crickets chirping*) If someone can do it, that person is you!” “Do you have any advice before I start? Something you wished you knew from the beginning?” “Don’t do it”. I have heard this multiple times. Don’t do it; Why would you do it?; Have all your children first, let them go through school, and then do it. Oh please, what do you people know about this? Well, people that are now postdocs and know the pits of despair very well. I really appreciate their advice. They took the time to meet me, share their experience with me, and advise me when I asked for it. But then Seinfeld’s voice in my head “I am special, my mother was right” (yes, I say this joke too many times). “So you need to do a part-time PhD in four years, with a toddler, no family support... If someone can do it that person is you!”“Do you have any advice before I start? Something you wished you knew from the beginning?”“Don’t do it” Our lovely Jamie Stevenson, from the ARC Wessex communications team, challenged us to write how we (PhD scholars) feel in the beginning, and then see how the PhD relationship evolves through the years. The most prevalent thought is “I am not good enough.” – There are plenty of resources and podcasts on imposter syndrome, it’s a big thing, go look it up. My advice on this is something Hugh Kearns said: focus on facts, not feelings. One really needs to be able to balance those internal voices to juggle the daily pressures and workload. This year was more challenging than I could have predicted, worse than the people that had advised me imagined. And I still had it so much easier than many people. In the first COVID wave I paused my SHAPE award, which was so hard to get, to go back full-time clinically. How could I focus knowing all that was happening? So that meant preparing the ARC PhD funding application in my own time, while working full-time in COVID research. In the second wave I thought “Let’s make a tradition out of this!”, deciding to apply for a NIHR Clinical Doctoral Research Fellowship. A lot of my funded PhD time went into preparing this Everest application (while clinically I was once again moved to COVID research but this time inpatients). March was horrible. Deaths from young patients, deaths from colleagues, working clinically in an area out of my comfort zone, and this huge application, the cherry on top of the cake. I was broken and needed help. My supervisors were incredibly supportive, and the Staff helpline was my lifeline. Then, stomach pain. Daily, unable to eat properly without feeling uncomfortable (I LOVE FOOD!!). “That is stress!”. My reply was “I always had a stressful life and never had stomach pain”. Thinking back, it probably is “just” stress. I mean, I am not 20 anymore… After telling my husband “I have sent you an email with my login details, if I end up in the resus room (wouldn’t be the first time), please submit the application. Otherwise, I will come back to haunt you!” I actually managed to submit the application, at 2am. At 9am, all the kind souls that were my signatories and participatories, had signed (Thank you so much!) and off I went to Bournemouth beach with my mother and sister, who had travelled in the middle of a pandemic to see us, and whom I had barely laid eyes on. Freedom Day, 11th June (Sorry, Boris!). I could really have used some holidays then - or an induced coma for a week - but no can do. Diving back into my systematic literature review and thanking my past self for keeping good records. I am now past my first viva/First PhD review progression, straight out of the oven (23rd July 2021) and received overwhelming positive feedback “You seem to think you are delayed Sandra, but you are excelling at the PhD” (I hope the assessor and the supervisors didn’t notice my watery eyes). I write this as I am flying to Portugal to see my lovely family. My daughter and husband have been there for a week. So on the day of my viva I was actually alone all day. Not to worry though, plenty of wine in Portugal (Omeprazole and Rennie in the bag) and time to celebrate with those who support me most on this crazy journey. How was this first academic year? It was absolutely amazing! So (SO) hard, but thrilling, challenging, just the way I like it (I am sure it is some disease and I am just going undiagnosed all these years). The taste of victory is addictive: pressing that “Submit” button, reading my assessor’s report on PGR Tracker, having my long surname in papers (soon to come), the validation from my patient population, my supervisors proud of me, and the hope of making change happen for the best care of patients and carers. I am so excited for the next steps. Knowing that I pushed my boundaries, I am doing what I love, working towards a career that I dream of, surrounded by an incredible support network. For now, out of office “ON” on Hospital and Uni accounts. Breaks are important and I have earned my two weeks off. Let’s see what year 2 brings 😉 “I have sent you an email with my login details, if I end up in the resus room (wouldn’t be the first time), please submit the application. Otherwise, I will come back to haunt you!” Previous Next

ARC Wessex Early Career Researchers - Cara Black, Naomi Leonard, Olivia Taylor and Annabelle Prescott < Back Engaging Children and Young People in Research Community of Practice Inaugural Meeting ARC Wessex Early Career Researchers - Cara Black, Naomi Leonard, Olivia Taylor and Annabelle Prescott September 2023, University of York, UK There is a knowledge gap in our understanding about approaches and methods for meaningfully involving and engaging with children and young people in matters and decisions that impact on them. We went to a two-day meeting at the University of York with researchers from the University of York, Bristol, Hertfordshire, Southampton and Auckland, NZ as well as a representative from the International Alliance of Mental Health Research Funders. This group came together to form an international Community of Practice (CoP), with the goal of sharing learning, methods, and experience for effective ways to engage young people. It also highlighted the wide variety of opportunities for putting children and young people at the heart of research, decision making and advocacy for their mental health and well-being. Here are our reflections as early career researchers (ECRs) from the meeting: What did we gain from the meeting? We thoroughly enjoyed being with professionals who have expertise in research for youth health, wellbeing, mental health, and youth advocacy. We gained an understanding of what exactly a community of practice is, listened to the experiences of all members and contributed to the conversations. It was lovely to hear international voices and get to exchange creative ideas for involving young people and encouraging them to share their ideas, as well as learning a great deal about youth engagement in general. What were our highlights? Hearing from the Healthy Mind Apprentices; Chloe, Kenzie, Lauren & Phoebe who are a group of young people passionate about mental health who work across Bradford and Craven to support young people, communities and schools with their health and wellbeing. They reflected on their time working with Y-MHESH and spoke about what their apprenticeship meant to them and what they have learned along the way. They shared with us that the problem is not that young people don’t have a voice; they instead believe that decision makers are not listening. Therefore, it was interesting to hear that we need to take necessary steps to ensure ‘decision makers’ are able and willing to share the decision-making power with young people. Overall being involved in the CoP was positive, as we had the opportunity to be involved in discussions with leaders in the field. Often, we can become ‘stuck’ in our ideas, so having the opportunity to present new ideas and challenge our Community of Practice to think in novel ways which align with the realities for children and young people was a highlight for sure. What could have been improved? It might have been more beneficial for our CoP group if the Healthy Mind Apprentices joined us for longer, as these fabulous young people reminded us that it is about listening and valuing meaningful involvement of children and young people, so it would have been great to have more youth representation in our own decision-making processes. Youth voices should be included throughout our CoP meetings, whether this be the Healthy Mind apprentices or groups of different young people. One of the main challenges in this area is that when coproduction and research is done with young people, they often don’t see the outputs they have created or get to feel the impact of their work before they move. It’s important we consider this when setting out to do co-production work or research with children and young people. What are the advantages of involving early career researchers in research and in the CoP? We provide a fresh perspective on topical issues today and have greater freedom to think beyond our specialty areas. This gives us the ability to consider the broader picture at an international or societal level and bridge the gap between young people and established researchers, as we understand the points of view and needs of young people, while simultaneously understanding research processes. This meeting was a great way to solidify the learning from the CoP and focus us on a clear path forward to best support the goals of children and young people in research. Reflections Reflections on public engagement and engagement in research for young people From the perspective of an ECR, it seems extremely important that “brand image” and visibility are recognised by senior management at universities and funders at research centers. Engaging well with the public, in this case, young people, both heightens visibility and reinforces brand image, which is why Patient and Public Involvement and Engagement (PPIE) work with young people within schools, young people’s PPI groups and other youth groups, including the Healthy Mind Apprenticeship scheme, is so valuable. Although, it can be difficult to get PPIE work funded. The purpose of PPIE work is to get people’s views on what needs to be researched and what is important to them, so to do this after a project has been decided defeats the purpose. Young people form part of our communities, but their inputs have been historically overlooked as unimportant or uninformed. Yet, some of the most valuable insights come from our young people, because at the end of the day this is their reality, and they live it every day. It is therefore crucial to have young people be meaningfully engaged so research, funding and decisions are aligned with what people want and need – and children and young people should be no exception. If we consider and give power to the voices of young people, then perhaps we can work to meaningfully elevate the health and wellbeing of entire future communities. So with that, we leave you with this whakatauki (Māori proverb). Mā whero, mā pango ka oti ai te mahi With red and black the work will be complete 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