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Who are we? Professor Alison Richardson Director Professor Catherine Bowen Deputy Director Our theme leads Dr Stephen Lim Ageing and Dementia Theme Lead Professor Nisreen Alwan Healthy Communities Theme Lead Professor Mari-Carmen Portillo Long Term Conditions Theme Lead Professor Michael Boniface Workforce & Health Systems Theme Lead Our central teams Philippa Darnton Implementation Lead Dr Michelle Myall Principal research and implementation fellow Dr Corine Driessens Principal Research Fellow (Statistics) Richard Trowbridge Chief Operating Officer Professor Catherine Bowen Academic Career Development Lead Ngianga II Kandala Principal Medical Statistician Rachael Hartup Senior Programme Manager Dr Kinda Ibrahim Academic Career Development Associate Lead Jamie Stevenson Communications and Partnership Manager Annemarie Hankinson Lead for Patient and Public Involvement Our partnership board members Professor Alison Richardson ARC Director Dr Karen Underwood Operational and Finance Lead University Hospital Southampton NHS Foundation Trust Professor Anne-Sophie Darlington School of Health Sciences University of Southampton TBC Hampshire and Isle of Wight ICS TBC Bournemouth University Nicky Judd Action Hampshire - Voluntary Sector Representative Richard Trowbridge ARC Operations Director Christine McGrath Managing Director Wessex Health Partners Dr Sarah Williams Chief Medical Officer - Hampshire and Isle of Wight Healthcare NHS Foundation Trust TBC Dorset County Hospital NHS Foundation Trust Elizabeth Davies-Ward University of Winchester Dr Chris Stock ARC Wessex PPI Strategic Lead Clare Rook NIHR Regional Research Delivery Network South Central Nicola Bent Deputy Chief Executive and Director of Innovation Adoption - Health Innovation Wessex TBC Hampshire Hospitals NHS Foundation Trust Dr Peter Wilson Chief Medical Officer, University Hospital Dorset NHS Foundation Trust TBC Hampshire County Council Richard Mandunya PPI Representative Professor Kyla Thomas South West Central Regional Research Delivery Network Philippa Darnton Implementation Lead Dr Paul Johnson Dorset ICS Professor Richard Thelwell University of Portsmouth Amy Hurst Bournemouth, Christchurch and Poole Council Sally Dace PPI representative

Professor Ruth Bartlett - National lead for DEM-COMM, post-doctoral training scheme for applied dementia researchers across the ARCs < Back Alzheimer's Europe Conference DEM-COMM researchers in Geneva Professor Ruth Bartlett - National lead for DEM-COMM, post-doctoral training scheme for applied dementia researchers across the ARCs DEM-COMM was out in force at the 34th Alzheimer’s Europe conference in Geneva. We weren’t all wearing DEM-COMM emblazoned bobble hats (next time, maybe?) but there were twenty of us, all presenting work, supporting each other, and generally making the most of being at this important annual event. Our headline act was Dr Esther Loseto-Gerritzen from the University of Nottingham, ARC East Midlands. Esther gave her first plenary talk: ‘Online peer support for people with young onset dementia’ in the largest auditorium I’ve ever been in; it was like the United Nations (see photo below). So very well done to Esther. We’re all proud of you and look forward to supporting you in your new role as Junior Board member and representative of the INTERDEM Academy . Other DEM-COMM fellows shared their work in a parallel session or one of the quick oral presentations (5 minutes), or like me, presented a poster. Some people gave two or three presentations - extra brownie points to you guys. Here’s a list of all works in the order they were presented at the conference, followed by a collage of photos of each person giving their talk. Oral presentations Hannah Wheat ‘Findings of the realist mixed methods, longitudinal evaluation of the D-PACT (dementia personalised care team), primary care based, post-diagnostic, dementia care model’. Amirah Akhtar ‘Depression and dementia risk: exploring the impact of cognitive dysfunction during recurrent depression in middle-aged British South Asians: A qualitative study. Orri McDermott ‘Co-working with local Caribbean communities to raise awareness and normalise talking about dementia’. Neil Chadborn ‘Yaad participatory project: exploring memories with South Asian Communities to understand the context of family of care for people with dementia’. Marie Poole ‘Understanding post-diagnostic dementia support through football organisations to provide person-centred, culturally appropriate support for underserved communities’. James Faraday ‘Better mealtimes for people living with dementia: working with care homes to share good practice’. Rasa Mikelyte ‘Inclusion from the start: co-development and application of a priority setting method for dementia care research’. Emma Elliot ‘Physical activity interventions for hospitalised patients with dementia: systematic review’. Orri McDermott ‘Lived experience of advance care planning and shared decision making’. Rasa Mikelyte ‘Co-designing an easy-read measure of care-related quality of life: reflections on involving people living with dementia and their supporters’. Megan Rose Readman ‘Understanding the experience of hearing loss for people living with lewy body or parkinson’s disease dementia. Emmanuel S. Nwofe ‘DEM-SAFE: co-designing information campaigns to promote brain health and reduce dementia risk in south Asian and African Caribbean communities in the UK’. Amirah Akhtar ‘DEM-SAFE: Living well with dementia for south Asian and African Caribbean communities in the UK’. Posters Jiamin Du ‘Prevalence and correlates of neuro-psychiatric symptoms in individuals referred to a memory clinic, and the distress experienced by their caregivers’. Hannah Wheat ‘Triadic communication during dementia care: a conversation analytical study. Megan Polden ‘Music Make Us! The impact of singing and dancing interventions on people living with dementia’. Tamara Backhouse ‘How can we improve personal care assistance for people living with dementia to reduce refusals of care? A realist synthesis Juanita Hoe ‘Risk Assessment in people living with dementia: a systematic review’. Esther Loseto-Gerritzen ‘Online peer support for people living with dementia: a scoping review’. Hannah Wheat ‘Supporting dementia support workers to adapt to their role within a primary care setting: what works, for whom and in what circumstances’. Ruth Bartlett ‘Building capacity in applied dementia research’. Chris Poyner ‘Personalising domiciliary dementia care via co-designed computational matching: a study protocol’. Ilianna Lourida ‘Data-driven discovery of associations between prescribed medication and dementia risk: a systematic review’. Emmanuel S. Nwofe ‘Dementia risk factors and brain health: a scoping review of interventions to reduce social isolation and loneliness among minority ethnic populations in OECD countries’. Thanks to Sarah Smith for darting around the venue to take these shots, great job! Previous Next

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.

Sandra Bartolomeu Pires is doing her PhD and here she updates us in her third yearly update on the slightly eccentric world of studying and managing a young family < Back Truth or Dare? PhD "I'm Lovin' It", Sandra Bartolomeu Pires is doing her PhD and here she updates us in her third yearly update on the slightly eccentric world of studying and managing a young family Oopsy-daisy, sorry guys. I know you've been on the edge of your seat, barely able to focus on your own work, wondering what I have been up to. I'll put you out of your misery then. Ok, so, remember, I moved back to Portugal in the middle of my PhD ( Catch up with it here! ). My smile faded as we hit 45°C and I felt I was being cooked alive. Not easy to deliver level 8 thinking while melting like Olaf in the sun. I'll tell you what, I actually had a great 3rd year on the PhD (read this part while playing “I am on top of the world” , by Imagine Dragons). But today I want to tell you the behind the scenes, because what help am I, if I just show you the “makeup front”... Here is the not-so-sexy-backstage: 1. I got my first-author publication , on an impact factor journal of 3.36. The backstage: this was my 4th submission! 4th! It took me one year from first rejection to finally getting the paper accepted. I am definitely making a mug with a print-screen of my paper. "Bartolomeu Pires et al" aaaah, I like the sound of that… 2. I got another first-author paper accepted the same month I got first published! I went from not having a first-author publication to having two, in a few weeks. The backstage: I worked on this paper for the last 2 years (!!!), in my own time, as a “passion project”. Because of course, I rather write a paper on a Saturday or midnight, than watching "Somebody feed Phil" on Netflix. Of course not! But I was really driven by the accountability towards my patient group and clinical team, that made this work possible (thank you to everyone that supported the REACT-HD group). I tell you what is funny, I got this paper accepted without corrections... No corrections people! This was a service improvement project that I ran and wrote in my own time, and the paper comes back without corrections. Pretty sure those reviewers are angels sent to earth to make doctoral students feel better. 3. I wrote a book chapter for the Handbook Integrated Care right up my alley, focused on the needs of people living with neurological conditions. Backstage: I was pretty much with a month of continuous migraines due to this chapter. Every time I sat to write it my brain was in tears. Creating 10 000 words conscious that I had a PhD waiting to be done added pressure. I also wrote a massive chunk while at the beach. And by "at the beach", I mean I was at home writing while my beautiful sister was taking care of my daughter and entertaining her at the (actual) beach (Thank you, Tânia). I would do it all over again, but it wasn't easy. 4. I got a small grant with the European Huntington’s Disease Network working group (Multidisciplinary Treatment and Care) to run an inspired nominal group technique meeting with experts at the European Huntington Association Conference (and breathe). We worked on standards of care for people living with Huntington’s Disease. I led the meeting in Belgium last October and it was a great feeling to deliver on such a big event. The backstage: I was dying of fear that I would be embarrassed at European level. I travelled 2 days for a 4 hour meeting, nearly lost the train leaving Blankenberge, caught a cold, and was sick with some viral nastiness for the next… 4 months. This embryonic idea will feed into an actual research project, that I am very excited (and equally scared of), and so this under the pump opportunity was incredibly worth it. From left to right, the marvellous Huntington’s Disease Marvel-like team: Ruth Veenhuizen, Dina Sousa, Alexandra Fisher, (little hobbit Me), Annemiek Helmers and Asuncion Martinez Descals. Missing from the picture but equally awesome: Astri Arnesen and so many more members of the working group. I've done more stuff, but I'll stop the humble bragging now. There's something I want my PhD colleagues, particularly the newcomers, to think about. How much you give, and how much you take. See, every single one of these achievements, came with significant hurdles and personal sacrifice. You will be asked so much, constantly, and the more you deliver the more you will be asked to do. So for your own sake, I want you to think of how you will preserve your wellbeing throughout your journey. Here are two strategies that work for me. Don't agree to something right away. Ponder on the possibility. "I'll get back to you on that". "Should we schedule a meeting for next week to discuss that?". "Maybe, let me check my schedule". Never commit straight away. Asses the cost-benefit. Is it worth doing? What's in it for you? Do you need to give your all 100% or maybe 60% will do good enough? Think of how much energy and time you give to a task and make a choice on what to take on. [I had a mentorship session recently, so my mentor’s words are stuck with me (thank you, beautiful mentor).] I want you to have a good experience in your research journey, which, probably and hopefully, will be longer than your PhD. Set the boundaries you want for life, what are you comfortable living with? And make it work for you. I'm not sure I'll manage to write to you again, my scholarship is coming to an end, and I have this disease of wanting to save the world through my research… Impressive that on my 4th year I am still this perky. I blame my supervisors who are so supportive that I believe I can do anything (yes, I have the best supervisors, thank you!) I’m loving it. And somehow, I seem to be hungry at this thought… How about you? Truth or dare? Need me? Find me on socials: Instagram @integrate_hd LinkedIn https://uk.linkedin.com/in/sandra-bartolomeu-pires-841594190 Twitter @BartolomeuPires Email smbp1u20@soton.ac.uk Sandra Sandra Bartolomeu Pires Previous Next

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fa252260-9b08-4bee-8ac4-2e68a124d401 Qualitative Data Preservation and Sharing (Q-DaPS) Principal Investigators: Prof. Fiona Stevenson ,, Professor of Medical Sociology, University College London, Head of the Research Department of Primary Care and Population Health; Prof. Geraldine Leydon-Hudson , , Professor of Primary Care Research, University of Southampton . Co-applicants: Dr Barbara Caddick Senior Research Associate in Primary Care and Honorary Senior Research Associate Department of History, University of Bristol; Dr Rebecca Barnes , Senior Qualitative Researcher, University of Oxford; Prof Carolyn Chew-Graham , Professor of General Practice Research, Keele University; Prof Sue Latter , Professor of Health Services Research, University of Southampton; Dr Emma Pitchforth , Senior Lecturer & Senior Research Fellow in Primary Care, University of Exeter. Prof. Catherine Pope , Professor of Medical Sociology, University of Oxford; Dr. Benjamin Saunders , Lecturer in Applied Health Research, Medical Sociology, University of Keele; Prof. Katrina Turner , Professor of Primary Care Research, University of Bristol; Prof Sue Ziebland Professor of Medical Sociology and Co-Director of the Medical Sociology and Health Experiences Research Group (MS & HERG) in the Nuffield Department of Primary Care Health Sciences, University of Oxford. Colaborators: Dr Ian Maidment , Reader in Clinical Pharmacy at Aston; Lynn Laidlaw is an experienced public contributor involved in UK wide and international research projects; Ali Percy, public co-applicant. Start: 1 June 2022 End: 31 May 2024 Background: Researchers may use different types of data to increase understanding of issues in relation to health and social care. Data may include audio or video recordings of interviews, focus groups (group discussions), and consultations between professionals and patients / service users, as well as written data, such as notes about research. These types of data are referred to as qualitative data. Funders of research increasingly encourage researchers to make their data available to be reused by other research teams. This is in part because qualitative data collection takes a lot of time and costs a great deal of public money. It is also considered ethical to make maximum use of data. Importantly, many people who participate in research tell us it is important to them that their contribution to research is used as much as possible. The project: Despite the increasing need and wish to safely store and share qualitative data, there is no central place to store and provide access to qualitative research data collected about health and social care. We will work with a company that specialises in keeping data secure and has a track record of working with university and health care organisations to develop secure digital storage (a repository) for qualitative data about health and social care. Part of the work will involve taking account of the views of members of the public about consent and use of data as well as data security. This will make sure the guidelines we put in place for people putting data into the repository or using data from the repository are acceptable to both researchers and participants in research. We will publicise the repository to encourage researchers to store their study data and allow access for researchers to answer their research questions. We will also provide a description of what is in the repository on a website so researchers can plan if they could use data from the repository rather than collecting new data. We will charge for use of data so the repository can be self-funding and sustainable in the long term. Expected impact : Increasing access to existing qualitative data from research projects in health and social care will make better use of what we already know about health and social care, saving time and money that would otherwise be spent on collecting new data. It will also satisfy the expectations of funders of research that data should be reused where possible. This project is particularly important as the COVID 19 pandemic has made data collection even more challenging in health and social care sites meaning we need to make the best use of the data we already have.

9cf70c4f-6d1c-4acf-8a29-5aa00565f951 ADOPTED (PhD): PREPARE-to-ACT study: Preparing for and Responding to Emergencies – A multi-phased qualitative investigation of Patients’ And members of their RElational networks’ decisions to use urgent and emergency care during Anti-Cancer Treatment Principal Investigator: John Defty, University Hospital Southampton NHS Foundation Trust Start: September 2022 Ends: September 2026 Background Complications of anti-cancer treatment can be life threatening . Anti-cancer treatments, including chemotherapy, radiotherapy, and immunotherapy, are increasingly provided on a day-case basis , meaning that complications occur at home and necessitate a response from urgent and emergency care services . Evidence suggests people receiving anti-cancer treatment delay seeking help despite access to dedicated emergency care (acute oncology services) . Focus of research to date has been for what reasons and when , rather than how and why, people with cancer use these services. Evidence suggests patients and informal carers rely on prior instructions from cancer specialists to identify and interpret the severity of complications but find relating to this information difficult when acutely unwell . Emergency ‘contingency planning’ was identified as a priority for improving the safety of anti-cancer treatment but, there are few studies that describe how pre-treatment emergency planning influences help-seeking for complications of anti-cancer treatment . With the number of people eligible for anti-cancer treatment expected to rise by two million by 2040, the need for research is now urgent. Results from our scoping review (completed; drafted for publication) suggest preparing for and making sense of urgent and emergency care is hard work for people with cancer. It also revealed poor understanding of how this work might differ for people receiving different types of treatment. This study aims to address these gaps by answering the question: ‘How do patients and informal carers prepare and seek help for complications of different anti-cancer treatments?’

ARC qualitative network Aim The aim of the group is to encourage debate and discussion about the place of qualitative research in health research, its core concepts and methods in a dynamic and supportive atmosphere. The group is multidisciplinary with over 140 participants drawn mainly from di fferent faculties (Health Science, Medicine, Psychology, Sociology) and universities across Wessex, and some national and international participants. The group aims to be helpful and facilitate the use and development of qualitative research in health, illness and care. Participants The group is primarily concerned with providing a peer support network and the development of knowledge and skills of early and mid-career researchers who are conducting or interested in qualitative research. Frequency of meetings The group meets every 2-3 months to discuss a specific topic related to qualitative research, with selection of topic normally driven by the members and their interests and needs. Webinar 1 May 2020 - Qualitative Longitu dinal Research (QLR) - hosted by Dr Eloise Radcliffe, from the MacMillan Survivorship Research Group & Dr Meredith Tavener, University of Newcastle, Australia Webinar 8 July 2020 - Phone and online qualitative interviews - hosted by Dr Sofia Strommer and Dr Kinda Ibrahim Webinar 2 October 2020 - Teaching and Qualitative Research Webinar 11 February 2021 - Realist synthesis - Webinar by Dr Ivaylo Vassilev, Dr Alejandra Recio Saucedo & Dr Ksenia Kurbatskaya as part of ARC Qualitative Network Webinar 12 February 2021 - Realist Synthesis Exercise for Context, Mechanism and Outcome (CMO) configuration - with Dr Ivaylo Vassilev, Dr Alejandra Recio Saucedo & Dr Ksenia Kurbatskaya as part of the ARC Qualitative Research Network Webinar 19 March 2021 - Innovative ideas for Patient and Public Involvement (PPI) in qualitative research - March 19 2021 - Presented by Dr Caroline Barker (ARC PPI lead) and Carmel McGrath - Chaired by Dr Kinda Ibrahim (download copy of presentation) Webinar Friday 18 June, 2021 11.00am-12.30pm - How to conduct a systematic review and synthesis of qualitative studies - Speakers and researchers, Dr Teresa Corbett and Dr Kate Lippiett, who will share their recent experiences in conducting systematic reviews of qualitative studies, top tips and issues to avoid. (Download copy of presentation) Webinar December 8, 2021 - 1.00pm-2.30pm - Dr Kat Bradbury explain the value of using Qualitative Research in designing interventions - A Person Based Approach (Download a copy of presentation) Webinar March 29, 2022 - 1.00pm-2.00pm - Dr Sarah Fearn and Mrs Veena Agarwal Content analysis of interviews and surveys: Methodology and application (Download a copy of the presentation) Webinar April 28, 2022 - 11.00am-12.30pm -Dr Amanda Blatch-Jones and Dr Katie Meadmore share their experience of using netnography to explore funding committee practice allocation of research funding. (Download a copy of the presentation) Webinar June 9, 2022 - Professor Carl May presents “qualitative studies of innovations in treatment, organisations, and delivery of healthcare services: how the normalisation process theory coding manual can help?" Webinar October 6, 2022 -Dr Kate Lyle and Dr Susie Weller : Exploring the complexity of patient journeys: analysing, representing and communicating experiences through visual methods Webinar March 29, 2023 - download slides : WATCH: Video Reflexive Ethnography as a research and healthcare improvement tool – methodology and application. Webinar September 15, 2023: Watch:Decolonising qualitative research: Employing a critical cultural safety lens to address inequity and social justice Dr Elissa Elvidge Slides Webinar December 1, 2023: Watch: ARC Qualitative Research Network: Understanding Narratives Through Timeline Drawings. Webinar March 12, 2024: Watch: ARC Qualitative Network: Co-Production Webinar May 15, 2024: Watch: ARC Qualitative Network: Photo Elicitation Webinar September 2024: Watch: ARC Qualitative Network: Think Aloud Slides set 1 and Slide set 2 Webinar December 5 2024 - Using I-Poems for Deeper Insights in Qualitative Data Analysis Slides Using i-poems for deeper insights in qualitative data analysis - Lisa Ballard UoS Using I-Poems to extract the essence of a participant's experience - Chloe Langford Uos Webinar June 3 2025 - Qualitative Research Network - Digital Stories for enabling the voices of autistic children and young people to contribute to transitions in education, health and social care settings. Resources The group has developed a “MUST READ LIST” for qualitative researchers that include articles and books that discuss different areas including: challenges of conducting qualitative research; ensuring quality in qualitative research; the place of different methods of data collection; teaching qua litative research. We built this dedicated resource to help and advise people and we are constantly updating the list to include any further useful resources. If you would like to update the Must Read list email Jamie.stevenson@soton.ac.uk The group has also started building a resource of people with their expertise so members can identify at a glance the most suitable person(s) within the group to help, advise, and support on a particular topic. If you would like to add your details, please click here Group Convenor If you would like to know more about the group or interested in joining in please email Dr Kinda Ibrahim K.ibrahim@soton.ac.uk

Research Fellow < Back Francesca Zecchinato Research Fellow Workforce & Health Systems Francesca Zecchinato is a recently appointed Research Fellow within the NIHR ARC Wessex Mental Health Hub at the University of Southampton. In her current role, she is working on a mixed-methods project to identify knowledge gaps among paramedics in managing patients presenting mental health conditions. This work aims to enhance the quality of mental health care provided to patients, improve patient experiences, and offer better support for paramedics. Francesca holds a BSc in Cognitive Psychology and Psychobiology (cum laude) and a MSc in Clinical Psychology (cum laude) from the University of Padova (Italy). She has completed her PhD at the Centre for Innovation in Mental Health, School of Psychology, University of Southampton, funded by the ESRC South Coast DTP and focused on the risk posed by parental anxiety to their children and on strategies to promote the mental health of children with anxious parents. Building on her previous research exploring the needs of parents with mental illness and how services can support their children’s mental health, Francesca’s work continues to focus on understanding the needs of individuals experiencing mental health difficulties and identifying evidence-based strategies to improve care delivery. Francesca uses both quantitative and qualitative methods in her research and poses great value in the involvement of experts by experience (via Patient and Public Involvement and Engagement) throughout the research process. Previous Next

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

53b76e5e-c361-4791-8e01-f147de703463 SOCIAL CARE: Evaluation of Southampton City Council’s Male Engagement Worker (MEW) Project Chief Investigator: Dr Michelle Myall, Principal Research Fellow, University of Southampton Co-Investigators: Dr Sophia Taylor, Senior Research Assistant, University of Southampton; Dr Susi Lund, Visiting Research Fellow, University of Southampton Partners who will collaborate on the research: Anjelica Finnegan, Senior Male Engagement Worker, Southampton City Council; Caroline Bate, Domestic Abuse Coordinator, Southampton City Council; Colin McAllister, Senior Public Health Practitioner, Southampton City Council; Francesca Mountfort, Male Engagement Worker, Southampton City Council Start Date: 19 October 2023 End date: 30 September 2024 Why is this research needed? An estimated 2.4 million adults experienced domestic abuse in 2019 in England and Wales. In April 2021 the Domestic Abuse Act was introduced in England and Wales. This created a new definition of domestic abuse to include “any incidents or patterns of incidents of controlling, coercive, or threatening behaviour, violence or abuse between those aged 16 or over, who are or have been, intimate partners or family members regardless of gender or sexuality. Domestic abuse can encompass, but is not limited to psychological, physical, sexual, financial and emotional abuse”. The Act required local authorities to expand their support and provision available to those experiencing domestic abuse. As part of a review by Southampton City Council into whether it meets the requirements of the new Act it found that alleged perpetrators of domestic abuse are not being effectively assessed or adequately supported. This is particularly true of young (step-) fathers. To address this gap, in 2020 Southampton City Council established a Male Engagement Worker (MEW) Project to work with high-risk male perpetrators of domestic abuse who have (step-) children and have local authority children’s services involved. This newly established service has yet to be evaluated. What are the aims? To evaluate Southampton City Council’s new domestic abuse service focusing around the newly created Male Engagement Worker Project. How will the study be carried out? We will carry out interviews with key informants and relevant stakeholders and analyse audit data collected about the service. What will happen to the findings? We will work with our project partners to identify who we need to engage and how to reach them. We will share findings with stakeholders through a presentation. We will produce a report and executive summary of findings and recommendations for Southampton City Council and share learnings with other relevant local authority and third sector organisations. Findings will also be reported on social media posts for the wider public, publications in academic and professional journals and attendances at conferences.

d213d93c-85f6-44bc-bd30-219d08d1075e COMPLETED: Material Citizenship Framework Project Principal Investigator : Professor Jackie Bridges (Professor of Older People's Care, School of Health Sciences, University of Southampton) Co-investigator : Dr Kellyn Lee (Visiting Fellow, School of Health Sciences, University of Southampton) Researchers: Dr Jane Frankland, Leah Fullegar Collaborator: Zoe McCallum (Chief Operating Officer, Brendoncare) Started : 1 February 2020 Completed: 30 November 2022 Project partners: Brendoncare Foundation. Co-funded by University of Southampton ESRC Impact Acceleration Account, Alzheimer’s Society, The Brendoncare Foundation Concept Material Citizenship, a new approach to dementia care, uses objects used to carry out tasks (such as a mobile phone or curling tongs) as a mechanism for improving the care experience for care home staff and people living with dementia in care homes. It does so by: Encouraging care home staff to include personal possessions in care plans Support use of personal possessions to maintain routines and rituals Enable people living with dementia to carry out everyday tasks, supporting them to the live the life they want to live Impacts Material Citizenship training was delivered to four care homes, part of two care organisations in the UK. Adopting a Material Citizenship approach has had a positive effect on many of the people who live, work and visit these care homes. According to one care home manager, taking a Material Citizenship approach has transformed how they provide care. They have seen an improvement in the wellbeing of residents and increased confidence in staff who attended the training. Care home staff are now supporting people living with dementia to engage in meaningful activities such as delivering newspapers, baking bread and polishing their own rooms – with the polish they like. It has also had a more fundamental impact on the care practices of a care home. In one care home the manager gave an example of how it has changed the culture in the care home. Prior to introducing Material Citizenship catering staff worked certain times of the day and food was restricted to set meal times. This has changed and catering staff are now available to support residents in meal choices and meal times that suit them. It was also reported that prior to Material Citizenship, time restrictions of when people should leave the care home and return to the care home were in place. Residents no longer need to be back at certain times, they have more freedom to come and go as they wish, something noted by an external healthcare professional as being wonderful. Material Citizenship has enabled care home staff to grow in confidence. Prior to attending training care home staff were observed to be frequently deferential when interacting with visiting healthcare professionals. Now care home staff are more willing to engage and assert themselves to get the best possible outcome for residents. By applying a Material Citizenship approach it has been reported staff are less likely to rush to the assumption that medical intervention might be the best way forward to to reduce behaviours they find challenging. Instead, staff are using objects as a way of exploring why a person may be communicating in a negative way and have more confidence when working with people living with dementia. Publication: Material Citizenship: An ethnographic study exploring object–person relations in the context of people with dementia in care homes