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3a7ef7ca-de0e-49f1-be5c-8349df40131c ADOPTED: Community Alternatives to aCute Hospitalisation for Older People who have Fallen (CAtCH-Falls) Principal Investigator: Dr Sara McKelvie, GP & NIHR Clinical Lecturer at the Primary Care Research Centre, University of Southampton. Team members: Lois Woods, Southampton Health Technology Asessments Centre, University of Southampton. Dr Rachel Dewar-Haggart, Primary Care Research Centre, University of Southampton. Professor Peter Griffiths, Health Sciences, University of Southampton Associate Clinical Professor Jacqui Prieto, Health Sciences, University of Southampton Dr Dan Baylis, Chief Medical Officer, NHS Solent Foundation Trust Dr Syed Hasan, Clinical Lead for Virtual Wards, NHS England Dr Elizabeth Angier, PhD student Main funding: NIHR School For Primary Care Research Starts: 1 April 2024 Ends: 31 March 2026 Summary Each year 30% of older people living in the community fall and are often taken to hospital for assessment. National guidelines recommend that after a fall, older people have a thorough check up and help to prevent further falls. We currently don’t know what the best assessment is for older people who fall and are assessed at home. There are several health services which can assess people in the community without a hospital visit. These can be described as “Community Alternatives to aCute Hospitalisation” (CAtCH) services. In different areas in the country these services have different team members, resources and ways of working. Research is needed who and what is needed to work in CAtCH services, particularly to support older people who have fallen. This study plans to look at previous work in this area by looking at published articles, service reports, government documents and internet resources to find out what is essential for these services. We also plan to survey and interview people who work in CAtCH services in the UK to understand what is available for older people who have fallen. The research findings will be used to develop resources for patients, the public and healthcare workers to showcase CAtCH services. The team also plan to produce a report for healthcare commissioners and support policy-makers. It will also allow the team to apply for further research funding in this area including further projects to look at public awareness of CAtCH.

45c5bd14-475f-4afa-ac9a-403f77123c69 CHAMPION: Children whose mothers are involved in the criminal justice system in Dorset & Hampshire: developing health and social care outcome indicators Chief Investigator Professor Julie Parkes Professor in Public Health Head of School of Primary Care, Population Sciences and Medical Education Faculty of Medicine University of Southampton, South Academic Block, Southampton General Hospital, Tremona Road, Dr Emma Plugge Associate Professor in Public Health School of Primary Care, Population Sciences and Medical Education Faculty of Medicine University of Southampton, Co-Investigators Dr Donna Arrondelle , Research Fellow, University of Southampton Dr Naomi Gadian, Public Health Specialist Registrar, University of Southampton Donna Gipson, Director EP:IC Consultants Ltd, West Malling, Kent Dr James Hall , Associate Professor of Educational Psychology, University of Southampton Paula Harriott , Head of Prison Engagement, Prison Reform Trust Professor Kathleen Kendall , Professorial Fellow of Sociology as Applied to Medicine, University of Southampton Dr Sara Morgan , Associate Professor in Public Health, Faculty of Medicine, University of Southampton Professor James Raftery , Faculty of Medicine, University of Southampton, Dr Lucy Wainwright , Director of Research, EP:IC Consultants Ltd, West Malling, Kent Starts: 1st April 2023 Ends: 30th September 2024 Summary In this study, we will identify important features of children’s health and wellbeing that are affected when their mother is sent to prison. For example, it might be their mental wellbeing or their behaviour. If we know what the important features are, then researchers and organisations providing services (such as the NHS) can monitor these for change; this is important to see how the child is but also to see if services are helping him or her. In the past, researchers have not looked in depth at the health and wellbeing of these children. We want to look at all the studies conducted so far to see what areas of their health have been looked at and also to find out areas of their health where the evidence is lacking. We will also speak with adults who were children when their mother was imprisoned to hear their views about what health issues are important and what would have helped them at that time. We will also speak to children who are living with their mother in a prison alternative in the community to find out from them about their health and what has helped them in this particular place. Finally, we will speak with a range of professionals, from doctors to teachers, who work with children whose mother has been imprisoned. We will ask them to tell us about the aspects of these children’s health and wellbeing that they think are important and likely to be affected by the child’s mother going to prison. When we have the information from published studies, from the children themselves and from the professionals, we will bring together a group of people with experience of their mother being imprisoned and also professionals. We will work with them to agree the most important features of children’s health and wellbeing that are affected when their mother is sent to prison. These ‘outcome measures’ are helpful to developing services for these children. People with experience of their mother being imprisoned have helped design the project. They will also be important in spreading the word about the study. This will enable us to reach not just academic audiences and policy makers through publishing in journals or presenting at research conferences, but also people with lived experience and charities that work in this area. Informing a wide range of people will be important in ensuring that the findings from this study are acted on.

9e2c7f6f-813a-4237-9695-46d21cbe9cea COMPLETED: Development, evaluation and provision of an intervention for primary and community NHS staff to help carers and homecare workers supporting people living at home with dementia with their continence. NIHR Three Schools Dementia Research Programme: NIHR School for Social Care Research, NIHR School for Primary Care Research and NIHR School for Public Health Research Team Lead investigator : Dr Cathy Murphy, Senior Research Fellow, School of Health Sciences, University of Southampton Co-i: Prof Mandy Fader, Professor of Continence Technology, School of Health Sciences, University of Southampton Co-i: Prof Miriam Santer, Professor of Primary Care Research, Faculty of Medicine, University of Southampton, NIHR School for Primary Care Research, Bournemouth based GP Co-i: Dr Leanne Morrison, Lecturer in Health Psychology, School of Psychology & Primary Care Research Centre, University of Southampton, NIHR School for Primary Care Research Co-i (PPI): Jane Ward, Alzheimer’s Society Research Network Member, co-founder of Dementia Friendly Hampshire, Patient Research Ambassador Co-i: Prof Jill Manthorpe, Professor of Social Work, Director of NIHR Policy Research Unit in Health & Social Care Workforce, King’s College London – Associate Director of NIHR School for Social Care Research Start date: 1st June 2022 End date: 28th Feb 2024 We found that Healthcare professionals wanted an easy and quick to use intervention to sign-post carers to continence care guidance. Homecare workers would welcome resources aimed at having difficult continence conversations The findings led us to develop the first evidence-based website to support healthcare professionals to provide continence advice to the carers of people living with dementia. The intervention also provides carers with detailed, practical self-management guidance. The website is www.demcon.org.uk A summary of the work can be found in this article: C Murphy, B Bradbury, M Fader, L Morrison, M Santer, J Ward, H Chester. Supporting continence care for people living at home with dementia. 22 APRIL, 2024. Nursing Times What we did with the new knowledge The findings have led to the first evidence-based intervention to support healthcare professionals to provide continence advice to the carers of people living with dementia. The intervention supports healthcare professionals to initiate conversations and then to sign-post carers to detailed, evidence based self-management guidance. The website can be accessed here: www.demcon.org.uk What are we doing next? The project has provided foundational findings for the next phase of work which includes developing a new intervention to support homecare workers to initiate continence conversations with people living at home with dementia. This work (DemCon2) is being funded by NIHR Three School’s Dementia Research Programme and will start Autumn 2024.

Professor Lee-Ann Fenge - lfenge@bournemouth.ac.uk Dr Andy Pulman – apulman@bournemouth.ac.uk < Back Realities of adult social care recruitment and retention World Social Work Day 2024 Professor Lee-Ann Fenge - lfenge@bournemouth.ac.uk Dr Andy Pulman – apulman@bournemouth.ac.uk Social Work Week is an opportunity to celebrate the value that social work brings to society as well as acknowledging the challenges the profession faces. The theme of World Social Work Day is ‘Buen Vivir: shared Future for Transformative Change’, calling for social workers to adopt innovative, community-led approaches that are grounded in indigenous wisdom and harmonious coexistence with nature. This is an important focus as we recover in a post-COVID world, where budgets continue to be constrained and social workers increasingly draw on their creativity and innovative practice to provide excellent support for those they work with. To transform practice, it is important that we build an evidence base of what works and why, developing social work and social care research that evidences the value of the approaches taken. To date social work has lacked an established culture of research within social care organisations, resulting in limited high-quality research evidence alongside a limited culture of staff development focused on research opportunities. Practitioners may wish to develop a practitioner-researcher focus to their work, but this is often not supported or developed by their employer. This results in a missed opportunity to develop ground-up inclusive research practice driven by the insights and priorities of practitioners and service users which is essential to underpin high quality care. Within the Wessex region, we have been working to support the development of social care research over the past few years. In 2022, we completed a year-long study examining social care research enablers and barriers which might prevent or limit a positive research environment for practitioners (Pulman and Fenge, 2023). This built the foundation for four projects across Wessex funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) Wessex – which all aimed to build research partnerships across local authorities (LAs) and universities in the region. As part of these projects, separate funding was available to support research champions embedded within local authorities, to support activities such as lunch time research discussions, journal clubs and the development of practitioner focused research. To encourage buy-in from the LAs we developed research in partnership with them to respond to key priority areas. One such project explored local recruitment and retention issues in adult social care (ASC) from the perspective of four populations of interest collecting data from n=131 participants across the four populations of interest: ( POI 1 ) Social care practitioners - social workers, allied health professionals, unregistered and other social care practitioners - currently working in adult social care at two local authorities (LAs) ( POI 2 ) Social care staff with responsibility for performing exit interviews with LA staff currently working at the two LAs ( POI 3 ) Students currently enrolled in social work undergraduate and postgraduate programmes within the Wessex region ( POI 4 ) Service users with lived experience of receiving services in either LA and advocates drawn from Wessex Region LA contracted services Realities of retention So what does our data tell us about the day-to-day realities of people currently working within adult social care? What pressures are they currently experiencing and what might make them question whether they want to stay working within the profession? Within POI 1, n=97 practitioners working in adult social care at two local authorities completed our online survey on recruitment and retention with n=25 subsequently being interviewed. We found: Within next three years, n=17 (17.5%) were planning on leaving social care Career change decisions included changing area of practice, independent working, moving sectors to the NHS/Third Sector and leaving the profession to go to other employment – the biggest response at n=7 (41.2%) The most important reasons for those wanting to leave social care within the next three years were ranked by number of responses and the highest ranked themes were then corroborated within the data collected from all participants as being ongoing issues of concern for LAs. Below we reflect on a number of the challenges, pressures and demands on ASC at the moment. Demands of administrative tasks Participants described support posts being reduced, causing them to spend more time on administerial processes. Additionally, more time-consuming paperwork was required and constantly changing processes created ongoing frustration. Workload demand The increasing demands on roles in terms of a rising number of cases within LAs and subsequent increased caseloads caused immense pressure on being able to process work in a timely manner. Inadequate staffing levels Staffing levels in some teams was not deemed to be adequate. Inadequate pay and benefits Pay was often equated to a lack of value in the profession when compared to other health professionals. Pay was viewed frequently as being less than equivalent to what could be obtained in the retail sector (with a view of that work also being less stressful in comparison). Concerns were also raised about the use of agency staff by LAs and the pay discrepancies between agency and permanent posts, alongside additional impacts on continuity and team stability. Perceived rationing of/limited resources for service users Struggles to provide adequate services to service users was a continual source of frustration in the face of current budgetary pressures. This could also be apposite to the personal ethics of working within the sector. Isolation/too much working from home The effects of hybrid working was viewed positively or negatively, depending upon the individual. Positives included the ability to concentrate more, better productivity with less interruptions and the inherent flexibility of choosing where and when an individual worked. Negatives included feelings of isolation and lack of support - a particular risk for new entrants. A lack of a team culture was also described in some cases. Additionally, management seemingly became more distant in some instances. Poor support and induction for newly qualified staff The induction process was viewed as being inconsistent across LAs. Providing initial support for new staff can be complicated by the effects of hybrid working, limiting support and team building opportunities for new entrants. Suggestions for improving consistency included mentoring, shadowing and standardising the structural induction process. Stress and COVID-19 burnout Stresses caused by working in the sector and lowered resilience over a prolonged period of time could contribute to burnout. Stress caused by the nature of the job was mentioned by a number of participants. COVID-19 and post pandemic effects contributing to stress were noted. This also impacted on staff working from home during and after this period. Stress was also caused by the ethical challenges of working within the constraints of the current social care system. Office environment/hot-desking issues As with hybrid working, both the pros and cons of attending the office were discussed by participants – with travel and parking costs described as factors which might influence office attendance. There was an acknowledgement that hub office space had been lost since the pandemic, which some thought had been detrimental. Both home and work environments had their supporters, depending on working preferences. For some, the office was preferred for providing deeper and broader opportunities for networking and helping to build a positive team culture. Open plan offices could be a problem due to their nature – be it issues of noise, a lack of privacy and storage space in some cases. Also a lack of locations to debrief or chat in private. Hot-desking could also prevent a team culture from developing. Next Steps Social Work England’s State of the Nation report (2023) suggested that high demand for health and care services, a rising complexity of needs and increases in vacancies continues to put pressure on a system that is already stretched. Workforce challenges around the recruitment and retention of staff alongside increased reliance on agency social workers constantly proves challenging for employers. Although social workers are adaptable and innovative in the ways they deliver social work, ultimately pressure in the system can undermine the stability of relationships which can have a direct bearing on people’s care (Social Work England, 2023). Similarly, Skills for Care (2021) concluded that a well-led, supported and developed ASC workforce were more likely to stay in post and deliver consistent, high quality, personalised care. Conversely, a workforce that was under-funded, under-developed, suffering from poor wellbeing and not supported to advocate for themselves and the people they cared for was likely to result in poor care or worse. Our research highlights that unless employers, and the government, recognise the current concerns of front-line practitioners, recruitment and retention will continue to be a challenge. Addressing these concerns, alongside wider consideration of career paths that may include the opportunity for research engagement for practitioners, is essential to stem the tide. Thanks to: The authors wish to thank all participants who took part in the online survey and gave up their time to be interviewed. This work was supported by the NIHR Applied Research Collaboration (ARC) Wessex More information on our project: Professor Lee-Ann Fenge - lfenge@bournemouth.ac.uk Dr Andy Pulman – apulman@bournemouth.ac.uk https://nccdsw.co.uk/clusters/research/building-research-capacity-in-social-care https://www.arc-wx.nihr.ac.uk/research-areas-list/social-care%3A-local-authority-adult-social-care-recruitment-and-retention-research-project Further viewing: Pulman, A. 2024. NIHR ARC Wessex Social Care Lunchtime Seminar – Realities of adult social care recruitment and retention in 2023 References: Pulman, A. and Fenge, L. A. (2023) Building Capacity for Social Care Research - Individual-Level and Organisational Barriers Facing Practitioners. The British Journal of Social Work. bcad117). Skills for Care. (2021). Evidence review and sector consultation to inform Skills for Care strategy: Final sector report. Available from: https://www.skillsforcare.org.uk/resources/documents/Adult-social-care-workforce-data/Evidence-review-and-consultation-analysis.pdf (accessed February 22, 2024). Social Work England (2023) Social work in England: State of the nation 2023. Available from: https://www.socialworkengland.org.uk/about/publications/social-work-in-england-state-of-the-nation/ (accessed February 29, 2024). Previous Next

Rajneesh Kaur and Eloise Radcliffe < Back PPI reflection on experience in attending an academic conference "Prescribing and deprescribing is something we do to patients so their viewpoint does matter." Rajneesh Kaur and Eloise Radcliffe Picture: Kinda Ibrahim, Eloise Radliffe, Nina Fudge, Jalpa and Rajneesh Kaur In September 2024 I attended an International Conference on Deprescribing in France (ICOD2). I'd been looking forward to this event since first coming to know of it about a year before. When registering for the conference it stated that they welcomed all 'researchers, clinicians and teachers in the deprescribing field'. This prompted me to email the organisers to ask if I could attend as a non-healthcare professional. They were very welcoming and reassured me that anyone can attend. I was excited not only to see what was happening at the cutting edge of deprescribing but also because I was going to meet the Southampton team in person for the first time at the conference. We had communicated over Teams before but the conference was a great way to meet each other in person. We recognised each other straight away and were in close company over the two days at the conference. The actual content of the conference reconsolidated a lot of what I had learnt about deprescribing so far. It was great to see leading figures deliver live and to be able to ask questions and have conversations with them. When mingling in the workshops and over lunch, people were interested to gain our perspective — I was attending with a good friend of mine who is also a non-healthcare professional like me, but as she is a solicitor, the healthcare professionals at the conference seemed very interested in the legal angle of deprescribing when speaking to my friend. This legal area does need exploring I feel. The viewpoint of patients and carers seemed like something the healthcare professionals valued, yet I felt it was under-represented in the conference. Prescribing and deprescribing is something we do to patients so their viewpoint does matter. I enjoyed listening to the presentation from David Gardner in particular, who shared a patient's experience, with the patient (George) interacting live on the call. This really brought to life how deprescribing can make a difference. Bringing the patient's perspective forward can bring inspiration and motivation to healthcare professionals to be more comfortable with stepping into the unknown and trying something new. I also appreciated that the conference organisers were trying to be open and ethical about their funding, especially pleased that they were not accepting funding from pharmaceutical companies. This made it seem OK that we didn't have any extravagant lunch arrangements, I'd rather that and keep the soul of the conference alive. Also, my friend and I were humbled and surprised to see that every other person at the conference was a pharmacist. It was almost as if after working with medication so closely, these pharmacists realise the harm as well as the good that medicines can do and therefore have come to the conference to understand and acknowledge the importance and challenges of deprescribing. Although deprescribing should be a part of prescribing, it is practised far less than prescribing. In fact, I would say that the benefits of deprescribing are just now being realised and are not mainstream at all. As a result, it seemed very challenging when I first set out looking for pathways to come off medication safely and only then eventually even came across the term deprescribing. The conference was international and it opened doors to meet people from other countries who were on the same page. I especially remember my encounter with a researcher from Denmark who said something very profound, she explained that it's not the patients that need educating, if we make a safe space where people can be deprescribed from medication — they will come. This researcher had struggles with a loved one who is on medication. This conference was a great platform to network and strengthen beliefs in deprescribing. It was only the second international conference ever held on this topic and I am very much looking forward to ICOD3 Eloise: One of the highlights of attending the International Conference on Deprescribing in Nantes, France, was meeting Rajneesh in-person, our highly valued and very engaged Patient and Public Involvement (PPI) team member. She has been a PPI group member of the ARC Wessex-funded MODIFY study (Medication review and deprescribing intervention for older people living with frailty in primary care) and is now chairing the PPI group for a new ARC Wessex-funded study DOMINO-HF (Deprescribing and medicines optimisation in older people with heart failure). I had previously only met her online and the conference was a great opportunity to talk in-person about the presentations and workshops by international leaders in the field of deprescribing and discuss Rajneesh’s ideas for future projects. The conference was a very welcoming and supportive environment and I would definitely agree with Rajneesh that more patients and caregivers should be represented at the conference, and will hopefully be encouraged to attend and participate in the next one, ICOD3 in 2 years time! Previous Next

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

2eeccab4-e624-4137-9443-6893d09b0589 COMPLETED: Change in treatment burden among people with multimorbidity: Protocol of a follow up survey and development of efficient measurement tools for primary care Principal Investigator: Professor Simon Fraser Start Date: 01 October 2020 End Date: 30 September 2024 Background Treatment burden is the effort required of patients to look after their health and the impact this has on their functioning and wellbeing. It is likely treatment burden changes over time as circumstances change for patients and health services. However, there are a lack of population-level studies of treatment burden change and factors associated with this change over time. Furthermore, there are currently no practical screening tools for treatment burden in time-pressured clinical settings or at population level. This is a three-year follow-up study of a cross-sectional survey of 723 people with multimorbidity (defined as three or more long-term conditions; LTCs) registered at GP practices in in Dorset, England. The survey collected information on treatment burden (using the 10-item Multimorbidity Treatment Burden Questionnaire (MTBQ) and a novel single-item screening tool), sociodemographics, medications, LTCs, health literacy and financial resource, as at baseline. Descriptive statistics were used to compare change in treatment burden since the baseline survey in 2019 and associations of treatment burden change were assessed using regression methods. Diagnostic test accuracy metrics were used to evaluate the single-item treatment burden screening tool using the MTBQ as the gold-standard. Routine primary care data (including demographics, medications, LTCs, and healthcare usage data) were extracted from medical records for consenting participants. A forward-stepwise, likelihood-ratio logistic regression model building approach was used in order to assess the utility of routine data metrics in quantifying treatment burden in comparison to self-reported treatment burden using the MTBQ. What we found Out •Among over 800 people aged 55 or older, living with multiple long-term conditions across Dorset, high treatment burden was common (about a fifth of all survey respondents) •Making lifestyle changes and arranging appointments were particular sources of difficulty. Having limited health literacy and experiencing financial difficulty were strongly associated with greater treatment burden. Having more conditions and more prescribed regular medications were also associated. •A single-item treatment burden measure was only moderately good at discriminating between high and non-high burden. •Among 300 of these people who responded to a follow up survey after an average of two and a half years, about a third experienced an increase in treatment burden. This was linked to having more than five long-term conditions and living more than ten minutes from the GP, particularly for people with limited health literacy. •A slightly revised single-item measure still only performed moderately, so it needs more development before being used in general practice. •Using data from participants’ GP records also only performed moderately at reflecting high treatment burden, so further development is needed to use routine health records to identify those at risk of high treatment burden. What difference will this knowledge make? •Given the high prevalence of high treatment burden in people living with multiple long-term conditions, healthcare professionals can legitimately engage with patients on this issue to recognise and seek to minimise avoidable burden. •Health systems (including Integrated Care Boards/Systems) should include consideration of treatment burden in policies and in service design and commissioning, aiming for ‘minimally disruptive medicine’. •Healthcare professionals can anticipate that treatment burden tends to worsen over time in a significant proportion of people living with multiple long-term conditions. •Further development of the short treatment burden questionnaire is underway in a separate NIHR-SPCR-funded study and could be introduced in primary care if it performs better. •Identifying ‘burden’ in data will be investigated in much more detail in a further NIHR-funded study Why is this important for patients, health and care providers and policy makers ? •Factors such as improving access to primary care, particularly for those living further away from services, may reduce treatment burden. •Different modes of health service delivery to specifically meet the needs of those patients more likely to feel overburdened may be needed •Improving health literacy should be an important goal for the health system •Overburdened patients may be more likely to struggle with adherence to self-management •Being overburdened may result in greater use of unscheduled care. This is a priority for the NHS and the link needs further investigation In related work we published a paper on a systematic review of system factors influencing treatment burden, led by a Southampton MSc Public Health student. This has identified important gaps in the evidence map for treatment burden. Providers and policy makers need to recognise the financial and administrative burden for patients and the lack of evidence on this: doi.org Influence of health-system change on treatment burden: a systematic review Background Treatment burden is a patient-centred concept describing the effort required of people to look after their health and the impact this has on their functioning and wellbeing. High treatment burden is more likely for people with multiple long-term conditions (LTCs). Validated treatment burden measures exist, but have not been widely used in practice or as research outcomes. Aim To establish whether changes in organisation and delivery of health systems and services improve aspects contributing to treatment burden for people with multiple LTCs. Design and setting Systematic review of randomised controlled trials (RCTs) investigating the impact of system-level interventions on at least one outcome relevant to previously defined treatment burden domains among adults with ≥2 LTCs. Method The Embase, Ovid MEDLINE, and Web of Science electronic databases were searched for terms related to multimorbidity, system-level change, and treatment burden published between January 2010 and July 2021. Treatment burden domains were derived from validated measures and qualitative literature. Synthesis without meta-analysis (SWiM) methodology was used to synthesise results and study quality was assessed using the Cochrane risk-of-bias (version 2) tool. Results The searches identified 1881 articles, 18 of which met the review inclusion criteria. Outcomes were grouped into seven domains. There was some evidence for the effect of system-level interventions on some domains, but the studies exhibited substantial heterogeneity, limiting the synthesis of results. Some concern over bias gave low confidence in study results. Conclusion System-level interventions may affect some treatment burden domains. However, adoption of a standardised outcome set, incorporating validated treatment burden measures, and the development of standard definitions for care processes in future research would aid study comparability. What are we going to be doing next? Several related studies are already underway: In the NIHR-funded MELD-B study, more in-depth exploration of the experience of living with multiple long-term conditions is underway. This study is exploring in depth the representation of the work/burden in electronic health records. See short animation here: https://www.youtube.com/watch?v=7mZptrMAapY In the NIHR SPCR-funded SPELL study, a Short Treatment Burden Questionnaire is being developed and tested, building on our findings. https://spell.blogs.bristol.ac.uk/ Work has been instigated with the Dorset Public Health team and ICS to explore the value of adding treatment burden concepts to frailty indicators to identify people who might benefit from a ‘carousel clinic’ which supports people with frailty/prefrailty in various ways. This work is ongoing With some additional ARC funding we are working with care coordinators in primary care in Southampton to take forward the learning from this study and the MELD-B study ( https://www.meldbstudy.org.uk/ ) to support and enhance their work with people living with multiple long-term conditions (MLTC): Https://www.arc-wx.nihr.ac.uk/research-areas-list/avoiding-care-escalations-through-targeted-care-coordination-for-people-with-multiple-long-term-conditions-%E2%80%93-a-knowledge-mobilisation-project Publications https://doi.org/10.3399/bjgp.2020.0883 https://doi.org/10.3399/BJGP.2022.0103 Simon Fraser delivered a BJGP podcast on this work which can be found here: https://www.youtube.com/watch?v=MLqrp4HOb7s

26c4cdf6-472a-4d3e-94e8-fa2c11941202 COMPLETED: Neuro Digital: From Attitudes to Strategies Principal Investigator: Professor Chris Kipps Team members: Dr Sarah Fearn, Dr John Spreadbury, Dr Rachel Chappell, Dr Corine Driessens Project Partners: University Hospital Southampton NHS Foundation Trust, University of Southampton Starts: 01 October 2021 Ends: 30 September 2023 Background The COVID-19 pandemic has changed the way neurological care is delivered to involve greater use of digital technology such as videocalls, smartphone apps or online platforms. University Hospital Southampton (UHS) has been developing its own electronic personal health record and self-management platform called My Medical Record. This online care platform offers patients more control over their healthcare by allowing them to: access their clinical letters and appointments in one place message their clinical teams for advice read relevant information on their condition monitor and share outcomes. Data from the platform, however, indicates differences in uptake and use amongst different groups of patients and healthcare professionals. Existing research also tell us that there are still important issues to understand around the uptake and use of digital technology in neurological care and long-term conditions more generally. Aims and Methodology The main aim of the research is to understand how to optimise the use of digital health technology in neurological conditions ( multiple sclerosis, Parkinson’s disease or Atypical Parkinsonian Syndrome (APS), headache, epilepsy, motor neurone disease or other neuromuscular disorder, Huntington’s disease, atypical or early onset dementia ). This will include how to optimise the use of My Medical Record for patients at UHS. The research will involve three interrelated pieces of work or ‘work packages’: Work Package 1 will use interviews and focus groups with neurological patients, carers, and healthcare professionals to investigate attitudes toward digital health technology and My Medical Record. Work Package 2 will use surveys with neurological patients to investigate relationships between personal and clinical characteristics and how people use digital health and My Medical Record. Work Package 3 will use the findings from Work Package 1 and 2 to produce some strategies to support people with neurological conditions to use digital health and My Medical Record. The strategies will be produced together with patient, carer, and healthcare professional groups in co-production workshops. Outcomes The NHS has highlighted the greater use of digital health technology as a way to improve the delivery of care over the next 10 years. The findings from the research will help us to better understand how to promote, optimise and support the use of digital health for people with neurological conditions, including the use of My Medical Record. Taking Part If you would like more information about the study or are interested in taking part, please contact Dr Sarah Fearn via email at S.Fearn@soton.ac.uk or Dr John Spreadbury on 07876818404 or jhs101@soton.ac.uk . What did we find out? With regards to personal characteristics affecting use: We found that older age, lower education, lower income, lower literacy and lower patient activation* were all associated with lower digital health technology uptake and use and more negative views. * Patient activation is a person's level of knowledge, skills and confidence to manage their condition(s) We found that gender and health status were not associated with uptake, use* or views. * Exception of health status and direct contact with healthcare team when participant has a specific issue Whilst we found that symptoms associated with having a neurological condition impacted the use of digital healthcare, we found that people with a neurological condition had access to digital healthcare (e.g. the tech / internet connection etc) comparable to the general population. We also held three co-production workshops to identify strategies that could support or promote the use of digital health technology amongst people with neurological condition. • These were the suggested strategies: What difference can this new knowledge make? Understanding the attitudes towards, and use of, digital health technology for people living with neurological conditions, their carers and their HCPs allows us to identify areas where more support might help promote and improve use. Identifying personal and health characteristics associated with more negative views and / or lower rates of use can help us to identify those more likely to need, or benefit from, additional support. Co-designing strategies to help support and promote the use of digital health technology for people living with neurological conditions, their carers and their HCPs, allows us to create support mechanisms that have been co-developed with the users themselves. 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. The use of digital health technology offers an opportunity The NHS Long Term Plan highlights the use of digital mechanisms as key enablers to improve NHS care delivery over the next 10 years. The use of digital health technology has the potential to help reduce variation or inequality in care, make care more integrated or joined up, identify people at higher risk of poorer outcomes, and promote self-management. It can also support clinicians to be more efficient, freeing up time for the sickest patients. 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. Our findings can help to improve support to people with neurological conditions to use digital health technology. It can do this by: Understanding the benefits and challenges of use Identifying those most likely to need or benefit from additional support Co-developing implementable strategies to support or promote use What Next? We will be using 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 -Present to ICB (digital transformation work programme); UHS (IT); Neurological Alliance -Inform the Optimising Outpatients project, which aims to create recommendations for the use of remote care in neurology outpatient services. We are continuing to analyse the data and disseminate findings to a wide audience.

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?’

bd368e62-bd41-4d7a-a7ea-673ea3582964 ADOPTED PROJECT: High Harm Domestic Violence Perpetrator Pilot Evaluation Chief Investigator: Dr Sara Morgan – University of Southampton Project Team Members: Mrs Katerina Porter – University of Southampton, Mrs Fiona Maxwell – University of Southampton, Professor Julie Parkes – University of Southampton Organisations Involved: Hampshire County Council, Hampshire Constabulary, Office of the Police and Crime Commissioner, Hampshire, The Home Office, Hampton Trust Background data Domestic violence & abuse remains a pressing public health concern In the UK, 18% of adults aged 16+ have experienced domestic abuse from an intimate partner 1 In Southampton, domestic abuse accounts for 33% of violent crime Methods Analysis of routinely-collected anonymised quantitative data on all individuals meeting the Operation’s inclusion criteria (n=321) Interviews with key professionals (n=12) 11,751 individuals identified as perpetrators of domestic abuse in 2 policing districts over 14 months 131 individuals included in the Operation Foundation cohort, for allocation to High-Harm Teams, who attempt to engage perpetrators into a specialist behaviour change programme, ADAPT Results Operation Foundation identifies the domestic abuse perpetrators who pose the highest risk of the highest harm to their victims, and most require Police attention 10% of the Operation Foundation cohort were referred to ADAPT 2% of the cohort completed the ADAPT programme over 24 weeks High-Harm Team officers used new working practices to attempt to engage perpetrators and provide support to make healthy behaviour changes Where perpetrators were unwilling or unable to engage with the behaviour change intervention, High-Harm Team officers relentlessly pursued those perpetrators to disrupt their potential to pose a risk to their victims Qualitative data from High-Harm Team officers suggests that the Operation Foundation method had had positive and worthwhile effects regarding reoffending rates and reduction in risk to victims Further research is needed to determine the effectiveness of the Operation Foundation method CONTACT: k.a.porter@soton.ac.uk s.a.morgan@soton.ac.uk REFERENCES: 1. Robinson, A. L. and Clancy, A. (2017). New initiatives to tackle domestic violence using the Priority Perpetrator Identification Tool (PPIT). Cardiff: Cardiff University. 2. Crime Survey for England & Wales, 2022 3. Southampton Data Observatory, 2022 4. ADAPT programme, run by Hampton Trust

c07181de-349f-421b-8259-3fdae15d93ab COMPLETED: Development of a structured deprescribing intervention for people with dementia or mild cognitive impairment in primary care (STOP-DEM) Project partners Memory Assessment and Research Centre ( Hampshire and Isle of Wight NHS Foundation Trust was a Participant Identification Centre (PIC) Portsmouth Older Person’s Mental Health (OPMH) Service (Hampshire and Isle of Wight NHS Foundation Trust) was a Participant Identification Centre (PIC) Full team Dr Kinda Ibrahim (CI), Dr Nicola Andrews, Cindy Brooks, Dr Jay Amin, Prof Sue Latter, Prof Simon Fraser (University of Southampton), Dr Rosemary Lim (University of Reading), Dr Michele Board (Bournemouth University) Assisted with the systematic review: Dr Eloise Radcliffe, Paula Sands (University of Southampton), Dr Kirsty Aplin, Dr Beth McCausland (NHS OPMH), Dr Ellen van Leeuwen (Ghent University) PPI: members of Friends of MARC group and members of Dementia Support – Hampshire and Isle of Wight’s Eastleigh support group Started: October 2022 Ended : September 2024 Jump to publications The team produced a video about their work: Team video about experiences of people living with dementia and their family carers Lay Summary Most people with dementia or mild cognitive impairment (MCI) have multiple chronic conditions and take five or more regular medications (polypharmacy). Polypharmacy in people with dementia/MCI can lead to increased risk of drug interactions, side effects such as falls and cognitive decline, and sometimes hospitalisation and death. Some types of medications (such as strong anticholinergic drugs) can increase risk of developing dementia and cognitive impairment. It is estimated that over £400 million is spent annually in the UK in hospital admissions related to harm from medications. Identifying harmful medications and stopping or switching to safer alternative (deprescribing) has the potential to reduce the risk of developing dementia and improve outcomes for people already living with dementia. However, to date, deprescribing interventions for people with dementia/MCI have focused on specific drug classes (e.g., anti-psychotics) or have been limited to inpatient or nursing home setting. In the UK, it is estimated that 61% of people with dementia live at home where medication is a part of daily living. Most studies also focused on medication-related outcomes (e.g. discontinuation of high-risk medications) rather than patient-centred outcomes, and did not involve the person with dementia and their carer. Therefor it is essential to understand how primary care staff could involve people with dementia/MCI and their caregivers in shared-decision making about stopping medications safely. Summary of findings We reviewed existing evidence on interventions to reduce or stop (deprescribe) medications for people with dementia or mild cognitive impairment (MCI). We found that most studies focused on medications that affect behaviour, mood, or perceptions and people in residential care. Many interventions reduced numbers of medications and improved appropriateness of medications. However, there was limited evidence on outcomes relating to safety and outcomes such as falls, quality of life and cognition. There was limited involvement of patients and informal carers in the interventions. We interviewed people with dementia or MCI, informal carers, primary care professionals and professionals working in memory clinics. We found that patients, carers and healthcare staff need to be involved in the deprescribing process. This process needs to consider patient cognitive abilities and independence. It also needs to consider carer experiences. Flexible medication management processes are needed to support successful deprescribing. These should be adapted to each person. These should involve joint working across the healthcare system. Deprescribing discussions need to be held in-person and in a safe setting. There needs to be enough time. Discussions should be led by a professional who knows the patient and can answer their questions. The possible impact of deprescribing decisions should be carefully considered. This includes impact on how medication is managed day-to-day and allso, carer burden. See the summary report Summary report for participants .pdf Download PDF • 559KB See the Key Practical Implications What we did with the new knowledge Sharing with frontline health and care professionals We shared our findings at a Hampshire and Isle of Wight Integrated Care Board (ICB) Medicines Optimisation webinar, engaging with an audience of 110 professionals, mostly pharmacists. We were invited to present the work at the RCGP Wessex Faculty Conference in March 2025 with around 100 attendees We shared our findings at a Wessex Older People’s Mental Health Academic meeting involving more than 50 professionals working in this area, primarily doctors. Meeting with the national lead for NHS prescribing to present the study. Academic Publications We have published two papers, one reporting the systematic review in Drugs and Aging and the other reporting the qualitative study in Dementia. The Importance of a Relationship-Centred Approach to Deprescribing for People with Dementia or Mild Cognitive Impairment in Primary Care: A Qualitative Study (November 20, 2025) Medicine Optimisation and Deprescribing Intervention Outcomes for Older People with Dementia or Mild Cognitive Impairment: A Systematic Review (March 2025) Oral and poster presentations at the European Geriatric Medicine Society Conference in Reykjavik, 24-26 September 2025 Presentation about using “photo elicitation” as a creative qualitative methodology at the ARC Qualitative Network Sharing with policy makers We have presented the study findings to MPs and representatives from royal colleges (RCGP, RPS, BGS) in a policy roundtable discussions in Westminster Nov 2025 We have produced a policy brief and shared it with relevant parties Nov 2025 We have presented the findings in an ARC Wessex stakeholder event Feb 2026 Sharing with the wider community including patient and public Summary findings and infographics from the qualitative study have been shared on social media, with a post on the ARC Twitter/X, LinkedIn and Facebook pages, and the ARC website. University of Southampton website link - Deprescribing for Dementia MSN News - Why good healthcare can mean stopping medications Daily Expresss coverage - Link Radio coverage - Greatest Hits Radio Video featuring members of our PPI group and other members of the dementia support group sharing the findings of the qualitative study. The video is being used in undergraduate and postgraduate teaching in Faculty of Medicine at the University of Southampton. Where Next? Grants : Dr Kinda Ibrahim (University of Southampton) and Dr Rosemary Lim (University of Reading) submitted Research for Patient Benefit grant application to develop and test and deprescribing intervention for people with dementia or mild cognitive impairment in primary care. Academic conferences: The Society of Academic Primary Care conference attended mainly by GPs and academics.