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< Back Ashley Amerson Product Manager 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. Your collection is already set up for you with fields and content. Add your own content or import it from a CSV file. Add fields for any type of content you want to display, such as rich text, images, and videos. Be sure to click Sync after making changes in a collection, so visitors can see your newest content on your live site. info@mysite.com 123-456-7890

< Back Kelly Parker HR Representative 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. Your collection is already set up for you with fields and content. Add your own content or import it from a CSV file. Add fields for any type of content you want to display, such as rich text, images, and videos. Be sure to click Sync after making changes in a collection, so visitors can see your newest content on your live site. info@mysite.com 123-456-7890

< Back Camilla Jones Content Manager 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. Your collection is already set up for you with fields and content. Add your own content or import it from a CSV file. Add fields for any type of content you want to display, such as rich text, images, and videos. Be sure to click Sync after making changes in a collection, so visitors can see your newest content on your live site. info@mysite.com 123-456-7890

< Back Marcus Harris Account Director 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. Your collection is already set up for you with fields and content. Add your own content or import it from a CSV file. Add fields for any type of content you want to display, such as rich text, images, and videos. Be sure to click Sync after making changes in a collection, so visitors can see your newest content on your live site. info@mysite.com 123-456-7890

ADOPTED PROJECT: 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 Chief Investigators: Professor Anne-Sophie Darlington Professor of Child and Family Psychological Health, School of Health Sciences, University of Southampton, SO17 1BJ, UK Email: a.darlington@soton.ac.uk Dr Bob PhillipsHonorary Consultant in Paediatric and Teenage and Young Adult Oncology,The Leeds Teaching Hospitals NHS Trust, Leeds Dr Jess Morgan NIHR Clinical Lecturer in Paediatric Oncology, Centre for Reviews and Dissemination, University of York, York Mr Ashley Ball-Gamble Children’s Cancer andLeukaemia Group Project team: Dr Nicole Collaço – University of SouthamptonDr Arvind Nagra – University Hospital Southampton NHS Foundation TrustDr Luise Marino – University Hospital Southampton NHS Foundation Trust Organisations involved: University of York, Children’s Cancer and Leukaemia Group, University of Southampton, University Hospital Southampton NHS Foundation Trust, The Leeds Teaching Hospitals NHS Trust, Kidney Research UK, Kidney Care UK, British Heart Foundation, Children’s Heart Foundation, Cystic Fibrosis Trust, Harry’s Hat, Shine, Together for Short Lives, The Martin House Research Centre. 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. Supporting decision-making Children and young people undergoing treatment face ongoing compromises to their immune system, which forces families to manage infection risks regularly. Decision-making under these threatening circumstances needs to be well understood. Furthermore, we know that parents and health professionals differ in terms of what underpins their decision-making. For example, when making decisions related to treatment for febrile neutropenia (with an increased risk of infection) parents value and assess quality of life, fear, and comfort differently to health professionals.[2] During the COVID-19 outbreak, children undergoing cancer treatment are perceived to be more at risk, and thus families will need to assess the information they receive and continue to make decisions in a changing environment. In addition, information provision through established media outlets and social media is constant and everchanging, and not always reliable. This illustrates the importance of investigating children’s and parents perspectives and experiences. Decision-making involves the uptake of information relating to benefits, risks, and uncertainties, but most importantly, this is guided by values and preferences.[3]Families have to construct them in the moment of decision making, based on the available information.[4] When information changes, choices change, producing inconsistencies and difficulties.[5] Again, congruence between families’ preferences, values and changing experiences need to be understood to allow them to make the best decisions in looking after their children. Without this data we will not be able to support them, nor advocate for them on a broader level. Reducing anxiety and stress Families across the country are worried; a rapid systematic review of the experience of families under quarantine for recent severe respiratory viruses (SARS, MERS) shows very high levels of traumatic distress.[6] This has led to the development of support materials and interventions: a book for children ‘Dave the Dog is worried about coronavirus’ developed by clinicians,[7] guidance developed by the Universities of Reading and Oxford to support children and young people.[8], and general guidance to manage anxiety for young people, developed by psychologists.[9]. Children with cancer and their families are particularly worried as their child is particularly vulnerable. A 6-week online intervention, iHOPE, [10,11] providing psychoeducation targeted at the parents of children who have cancer has been piloted, and an evaluation of opening greater access to this programme is planned. Many other support services, generally delivered by face to face meetings and group sessions, are transitioning to an online delivery. These will not be strictly ‘programmatic’ and may be ongoing. During this period of implementation of this resource into the health service, there is a need to simply evaluate its effectiveness, by introducing a short assessment of anxiety and stress before and after the delivery of the intervention. The current study proposes to ask parents to complete a short (to minimise burden) validated questionnaire before and after the intervention. Research Aim and Objectives The study will consist of two work packages (WPs). The aims of WP 1 are 1) to explore experiences, information and support needs and decision-making, and 2) to explore how these change over time as the situation with COVID-19 evolves. The aim of WP 2 is to evaluate whether proposed online interventions to support families reduce anxiety and stress. Research publication: 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

Latest news News heath research Search ARC Update newsletter Summer 2024 Welcome back Great to be back after the summer break for some. We have lots of exciting news to share, and plenty of... Temporary nurses don’t mitigate deaths linked to staff shortages A new study led by the University of Southampton has found that using temporary nursing staff to fill rotas only partially combats an... FoMo, Periods, Vaping and Vaccines – What do young people want Health researchers to look into? When it comes to research, particularly health research, people often imagine people in white coats in laboratories and test tubes. While... Research team awarded £2.4 million to help people with multiple long-term conditions stay well About 7 million people in the UK live with more than one health condition. It can often be difficult for those people to get the right... What do we know about frailty? Dr Carole Fogg a Senior Lecturer at the University of Portsmouth and Portsmouth Hospitals NHS Trust has been working with colleagues to... Our summer event - June 2024 In June we held our yearly ARC Wessex event, bringing together researchers from across the region and the people who support our health... Helen's story: Caring for someone with a dual diagnosis of dementia and paranoid schizophrenia Helen Sloan is a public contributor for the ARC Wessex Mental Health Research Hub and Social Care. She has written beautiful blogs about... ARC Wessex update - Spring 2024 More money, Long Covid and digital help, safety in numbers for nursing, cutting down on meds Alzheimer's Society give £370,000 to extend dementia research The Alzheimer’s Society and NIHR have come together to host a three-day event for existing DEM-COMM fellows. During the event, teams... Unique research collaboration highlights innovative approaches for post-pandemic healthcare A new report outlines the findings of 14 projects which identified and tested promising innovations to support post-pandemic ways of... ARC Wessex welcomes Implementation lead in joint role with Health Innovation Wessex Philippa Darnton has been appointed to the role of Director of Insight for Health Innovation Wessex, following a period leading the... Online tool for Long Covid support A website to support people living with Long Covid was launched in March on Long Covid Awareness Day by a research team led by a... Is it cost-effective to deploy more nurses on hospital wards? A new publication by researchers at NIHR ARC Wessex based at the University of Southampton has examined evidence from over five thousand... ARC Wessex given more than £3 million to extend work until 2026 The National Institute for Health and Care Research (NIHR) has extended the work of NIHR ARC Wessex for 18 months, allowing the ARC to... Award for ADHD Professor Samuel Cortese Professor Samuele Cortese, is based at the University of Southampton. His research topic with ARC Wessex is looking at personalising... £6million added to dementia research The ARCs have been successful in obtaining another £6million to help improve the lives of people living with dementia, their families and... We have a new Deputy Director - Professor Cathy Bowen Professor Catherine Bowen has been selected as the ARC Wessex Deputy Director to support our programme of research and capacity... Scientists want to know how the cost-of-living crisis effects you People have been feeling the pinch with higher interest rates, bills and food costs over the last year. In Hampshire, Dorset and the Isle... 1 2 3 4 5

Wed, Oct 09 | Chilworth DALLI toolkit launch - Domestic Abuse and Life Limiting Illness Enhancing the identification and response to domestic abuse for people living with a life-limiting illness: The DALLI Toolkit Time & Location Oct 09, 2024, 1:00 PM – 2:00 PM Chilworth, 3 Venture Rd, Chilworth, Southampton SO16 7NP, UK About the event OR via MS Teams Please click here for more details and to register You are invited to the launch event for the DALLI Toolkit – a resource developed by researchers at the University of Southampton and NIHR Applied Collaboration Wessex in partnership with health and social care professionals, victim-survivors, and specialist domestic abuse organisations - to provide information and practical suggestions for identifying and responding to domestic abuse experienced by people living with a life-limiting illness. The Toolkit is designed for those working in hospice and palliative care services, as well as local authorities, the third sector and anyone who provides care or support to those living with a terminal illness and approaching end of life. The event is an opportunity to find out more about the Toolkit, learn how it can support you in your practice and professional role and hear from a victim-survivor. It is also a chance to see the first screening of the DALLI Toolkit film. For further information please email: dalli@soton.ac.uk Please note : the event will contain content describing domestic abuse in the context of life-limiting illness. Hearing about this can be difficult, so please feel free to step away during at any time if you need to. If you are affected by abuse, you are not alone, and people are ready to listen and help. You can contact the National Domestic Abuse Helpline on 0808 2000 247 anytime. You can also webchat with an advisor Mon-Fri, 3-10pm on https://www.nationaldahelpline.org.uk/en/Chat-to-us-online . Show More Share this event