Search Results
265 results found with an empty search
- Improving support for self-management (WASP)
f5788d42-1d65-4ac1-a9d5-00a8fcb316fd Improving support for self-management (WASP) Using the Wessex Activation and Self-Management and Personalisation (WASP) Tool to design and implement system wide improvements in self-management support for people with long-term conditions Principal Investigator: Professor Mari-Carmen Portillo Team members: Professor Mari-Carmen Portillo (Professor of Long-Term Conditions, School of Health Sciences, University of Southampton), Dr Hayden Kirk (Consultant Physiotherapist & Clinical Director Adults Southampton, Solent NHS Trust), Dr Chris Allen (Lecturer, School of Health Sciences, University of Southampton), Stephanie Heath (WASP Clinical Lead, Royal Bournemouth & Christchurch Hospitals NHS Foundation Trust), Dr David Culliford (Senior Medical Statistician, School of Health Sciences, University of Southampton), Dr Louise Johnson (WASP Project Manager, Royal Bournemouth & Christchurch Hospitals NHS Foundation Trust), Dr David Kryl (Director, Centre for Implementation Science, University of Southampton), Professor Alison Richardson (Professor of Cancer Nursing and End of Life Care, University of Southampton) Start: 1 October 2019 Ends: 30 September 2024 Project Partners: Solent NHS Trust, Royal Bournemouth & Christchurch Hospitals NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, Hampshire and Isle of Wight ICS Lay summary The NHS wants to achieve better health outcomes, improved experience for patients, and more effective use of services and resources for people living with a long-term health condition. Helping people to self-manage their condition helps improve people’s health and their experience of managing the condition in everyday life. Increasing people’s knowledge, skills and confidence may help them to be more actively involved in self-management of their condition. This is sometimes referred to as ‘patient activation’. The Wessex Activation Self-Management Programme (WASP) Self-Assessment Tool has been developed to help health teams understand where their service could do more to help people be more active in the management of their condition. The tool can be used by people who use services and people who plan, manage and deliver care and services. It asks about behaviour – WHAT people actually do, and WHY they do (or don’t do) certain things. The answers can help health teams decide how to improve their service. We have already tested the tool in several different services. Early findings show differences across health services. For example, managers reported ways in which their services helped people to be more active in the management of their condition, but frontline staff (such as nurses and doctors) and patients themselves often had different experiences of this. The next stage is to use the tool to help teams identify aspects of support in their service that require improvement and help services to make these improvements. We will do this by: Assessing the services current practice in relation to self-management support, using the Wessex Self-Assessment Tool. Providing bespoke coaching and support (over a 10-month period) to enable teams (consisting of those who fund the service, managers, frontline staff (such as doctors, nurses and physiotherapists- those who deal directly with patient) and patients themselves) to identify areas for improvement and support them to make improvements that benefit patients. Re-assessing self-management support by repeating the WASP Self-Assessment Tool. Several ways will be used together to decide if this works, how it works and how it can be improved. These will help us understand if this coaching and support can benefit other health services. Firstly, members of healthcare team (including those who provide funding for the service, the services managers, front line staff and patients themselves) will complete a questionnaire. At the end of the study, following the teams coaching and support, this questionnaire will be completed again by all members of the team and the answers will be compared with those provided at the beginning to see if improvements have been made. We expect 8 teams to take part in this. In addition, a small number of teams will be observed during the coaching and support sessions and will be given the opportunity to share their experiences of the service in an interview at the start of the project, as well as of the coaching and support that they have received during an interview at the end of the project. This will help us understand how the coaching and support works and how it can be improved upon. We expect to work with 3 of the 8 teams in this part of the project. Now there's a series of FREE webinars to develop skills supporting personalised care, for health and care professionals in the Isle of Wight, Hampshire. More here
- COMPLETED: Digital support for maintaining physical activity in people with long-term conditions
91dc7d16-9cb6-45e1-b40a-33037865948b COMPLETED: Digital support for maintaining physical activity in people with long-term conditions What promotes and prevents health professionals using ‘digital’ technologies to support people with long-term conditions (LTCs) to maintain physical activity and improve their health and wellbeing? Principle Investigator - Professor Mary Barker ( meb@mrc.soton.ac.uk ) Senior Research Assistant – Dr James Gavin ( j.p.gavin@soton.ac.uk ) Team Prof Mary Barker (PI), Prof Maria Stokes (Co-Lead), Prof Suzanne McDonough (Co-Lead at RCSI), Mrs Luisa Holt, Dr Aoife Stephenson (RCSI), Mr Paul Muckelt, Dr Nisreen Alwan, Dr Katherine Bradbury, Dr James Faulkner (University of Winchester), Dr Dorit Kunkel, Dr Euan Sadler, Prof Sandy Jack, Mrs Rachael Eckford, Mr Jem Lawson (PPI) and Mr Ranj Parmar (PPI) Project partners • Royal College of Surgeons in Ireland • University of Winchester What did we find? We interviewed 15 GPs and health professionals to find out their experiences of using digital technologies, such as online consultations, mobile-phone applications (or ‘apps’) and websites, to support people with LTCs to manage their health. We now have a better understanding of the factors preventing and promoting the use of digital technologies by health professionals to support people with LTCs in the NHS. These included: Preventing : one ‘app’ will not suit all LTCs, ‘apps’ must be user-friendly and accurate, clinicians need to dedicate time to the technology, security risks, patients need to have digital literacy, and long-term investment is required (time and finance). Promoting : ‘apps’ being evidence based, peer/social support of GP networks (including positive feedback), charity endorsement, COVID-19 changing people’s attitudes to digital health, ‘apps’ being linked to a hospital’s IT systems, accountability/monitoring of ‘apps’, and digital champions What difference will this make? Better understanding of the factors preventing and promoting the use of digital technologies by NHS healthcare professionals can help researchers develop new assessments and interventions to help people with LTCs to self-manage their conditions. In future, it could inform a regional evaluation of existing self-management programmes and initiatives to support people with LTCs to maintain their health and physical activity, from a digital perspective What are we doing with this? We are finalising a research paper for journal publication We are interpreting the research findings with a view to ‘implement’, or help the uptake of the knowledge into practice in writing the paper In conjunction with the ‘non-digital’ MOTH study, we are in the process of applying for funding through the Impact Fund to work with MOVE Consulting ( www.moveconsulting.co.uk ) who have specific expertise with physical activity behaviour change. The aim is to produce a plan for how best to proceed with improving partnership working within Wessex. What next? We plan to combine the non-digital and digital findings from the MOTH programme and apply for funding to evaluate existing example(s) of good practice, which currently support people with LTCs to maintain physical activity (with and without digital technologies), for health and wellbeing. This would be with a view to identifying beneficial modifications to both partnership working and the ways in which they are supported with self-management of their lifelong physical activity levels. A suitable funding call is the NIHR Research for Patient Benefit (RfPB) programme (tiers 2 or 3), with the next call targeted at Methodologists . Non-Digital Moth Summary Publications https://doi.org/10.1177/20552076221089778
- COMPLETED: The ImPACt study - Improving physical activity of older people in the community
4f21e11e-3fe7-460c-9bc0-113a56eec7a5 COMPLETED: The ImPACt study - Improving physical activity of older people in the community Club members at Brendoncare joining in group exercise Principal Investigator: Dr Stephen Lim Team members: Dr Stephen Lim (NIHR Clinical Lecturer in Geriatric Medicine, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Professor Helen Roberts (Professor of Medicine for Older People, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Dr Kinda Ibrahim (Senior Research Fellow, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Esther Clift (Consultant Practitioner in Frailty, Southern Health NHS Foundation Trust, Lymington New Forest Hospital), Samantha Agnew (Head of Clubs Services, The Brendoncare Foundation , Winchester), Pam Holloway (Patient representative) Start: 1 February 2020 Ended: 31 October 2021 Project Partners: University of Southampton, University Hospital Southampton NHS Foundation Trust, Southern Health NHS Foundation Trust, Brendoncare. Lay summary Physical activity is important for older people. It has many benefits including maintaining older people’s ability to perform activities of daily living, be independent, and improve their well-being. However, many older adults living in the community do not engage in regular physical activity. Findings We found that we could train volunteers to support older people during the COVID-19 pandemic to stay active by performing exercises that help strengthen their muscles. Trained volunteers from Brendoncare led the online group exercises for older people who attended online community clubs during the COVID-19 pandemic. This was a challenging time when social distancing and lockdown rules were in place, which limited opportunities for older people to stay active. We recruited 19 volunteers, and 15 volunteers completed the training. The volunteers were mainly female (78%), with an average age of 68 years. The exercises were seated exercises and older adults were given exercise bands to increase the exercise intensity. Halfway through the study, lockdown restrictions were lifted, and some groups continued the group exercise in a face-to-face setting. The volunteers led 184 group weekly exercise sessions (127 online and 57 in-person). 30 older adults participated in the group exercises. We interviewed volunteers, older adults and Brendoncare staff to find out more about what they thought of the online group exercise. The older adults enjoyed the intervention and understood the benefits of exercising. Additionally, they felt that they could exercise in a relaxed way with their peers without fear of being judged. The group exercises helped reduce social isolation and motivated older adults to engage with the exercises. Volunteers were enthusiastic to support the exercise groups. They appreciated the training and opportunity to lead the group exercises. One volunteer reported that the role gave her a sense of purpose by playing an active role the community club. Brendoncare staff members were a great help to the older adults and supported them with any issues, in particular those who were less familiar with the internet. At six months, we found that older adults who participated in the group exercise had an improved physical activity level. The time spent in light physical activity per week improved from an average of 1530 minutes per week to 1620 minutes per week. Only two minor incidents happened during the group exercises. Two participants experienced worsening of old injuries while performing the exercises. Overall, we found that volunteers can be trained to lead online group seated exercises. The exercises were safe and older adults enjoyed the exercises as well as the social interaction in the group setting. What we did with the new knowledge We supported Brendoncare in continuing the exercise groups after the study had ended. We presented our study findings to the board of trustees and demonstrated the exercises. Brendoncare has since employed an activity coordinator to continue to role of training volunteers and supporting volunteer-led exercise groups within Brendoncare. We trained the activity coordinator and shared our exercise sheets and other study materials to help Brendoncare develop their own training package. They are now actively recruiting more volunteers to lead group exercises in their community clubs. https://www.brendoncare.org.uk/get-involved/support-us/volunteering/#:~:text=Chair%20Based%20Exercise%20Volunteer,improving%20their%20health%20and%20wellbeing . Where next? Having explored how we can trained volunteers to engage with healthy community-dwelling older adults to stay active through online group exercises, we collaborated with researchers from the Southampton Biomedical Research Centre and Bournemouth University to further develop this volunteer-led online intervention. We have been successful in securing research funding (£51,000) from University Hospital Southampton NHS FT to conduct a study to explore a multimodal intervention consisting of exercise, nutrition and behaviour change support, to engage with older people living with frailty who have been discharged from hospital, to stay active and eat well. This research is now underway and due to be reported in the summer of 2024. What did people say about the work? Volunteer : “We do it because we want to help others…. we enjoy it. I'm gonna go back to belonging again, I feel that I'm benefiting from the group. Because again, I feel like I belong to that group….. I get so much out of it.” Club member: ‘We are not self-conscious when they (volunteers) are around. We have a laugh as well.’ Club member: ‘I’ve really enjoyed it because it keeps you in touch with people, especially during this COVID….. I still feel as if I’m part of a group.’ NEWS: ImPACT volunteers recognised for their wor k ImPACt exercise video IMPACT Exercise with Steve and Esther from NIHR ARC Wessex on Vimeo . Impact Exercise video using Resistance bands - Dr Sam Meredith watch the video on Vimeo Publications https://doi.org/10.1007/s40520-020-01556-6 https://doi.org/10.1007/s12603-020-1442-0 https://doi.org/10.7861/clinmed.2022-0283 https://doi.org/10.1186/s12877-022-03589-0 doi.org Evaluating the feasibility and acceptability of virtual group exercise for older adults delivered by trained volunteers: the ImPACt study protocol Introduction Physical activity is important for healthy ageing. Despite strong evidence on the benefits of physical activity for health and well-being, physical inactivity remains a significant problem among older adults. This study aims to determine the feasibility and acceptability of implementing an online volunteer-led group exercise for older adults. Methods A quasi-experimental mixed-methods approach will be used in this study. A training programme will be developed to train volunteers to deliver online group exercises to older adults aged >65 years (n=30). The primary outcome is the feasibility of implementing the intervention. This will be assessed by the number of volunteers recruited, trained, and retained at the end of the study, and the number of exercise sessions delivered and completed by participants. Secondary outcomes include physical activity levels measured using the Community Health Model Activities Programme for Seniors questionnaire, Barthel Index, EQ-5D-5L as a measure of health-related quality of life, SARC-F to determine sarcopenia status, and PRIMSA-7 to determine frailty status. Outcomes will be measured at baseline and at 6 months. Qualitative interviews will be conducted with volunteers(n=5), older adults (n=10) and family members (n=5) to explore their views on the intervention. Analysis Simple descriptive statistics will be used to describe participant characteristics, the feasibility of the study and the impact of the intervention on health outcomes. Parametric(t-test) or non-parametric(Mann-Whitney U test) statistics will be used to analyse continuous variables. χ2 test will be used for categorical variables. Qualitative data will be analysed using an inductive thematic analysis approach. Ethics and dissemination This study received ethical approval from the University of Southampton Faculty of Medicine Ethics Committee and Research Integrity and Governance committee (ID: 52 967 .A1). Study findings will be made available to service users, voluntary organisations and other researchers who may be interested in implementing the intervention. Trial registration number [NCT04672200][1]. [1]: /lookup/external-ref?link_type=CLINTRIALGOV&access_num=NCT04672200&atom=%2Fbmjopen%2F12%2F2%2Fe052631.atom
- ADOPTED: Evaluation & Exploration of Multi-Agency Stalking Partnership Interventions
6bd0eb74-94bb-4d5a-8743-13b5ee8c57b0 ADOPTED: Evaluation & Exploration of Multi-Agency Stalking Partnership Interventions Evaluation & Exploration of the Hampshire & Isle of Wight Multi-Agency Stalking Partnership (MASP) Team: Research Team based at University of Southampton Faculty of Medicine and ARC Wessex Partners who will collaborate on the research: Hampshire & Isle of Wight Office of the Police & Crime Commissioner, Hampshire & Isle of Wight Constabulary, Southern Health NHS Foundation Trust, Hampshire & Isle of Wight Probation Service, & STOP Domestic Abuse. Start date: 1 April 2023 End date: 1 April 2025 Hampshire & Isle of Wight (HIOW) was one of the three pilot sites of the Multi-Agency Stalking Intervention Programme (MASIP), commissioned by the Home Office in 2018. The programme identified positive outcomes from the limited number of case consultations and direct interventions delivered. Funding for MASIP ceased in March 2023 and new funding was sought to refresh the initiative and realise its potential. With two years of funding from the Home Office, from April 2023-March 2025, the partnership has been renewed to address stalking in HIOW. Key partners include the Office of the Police & Crime Commissioner for HIOW, HIOW Constabulary, Southern Health NHS Foundation Trust, HIOW Probation, and STOP Domestic Abuse. This service, called the Multi-Agency Stalking Partnership (MASP), aims to deliver a package of interventions to reduce the impact of stalking. The objective of this partnership is to reduce the risk of further stalking behaviour, and improve the psychological wellbeing of the person using stalking behaviours, whilst keeping the safety of the survivor and their dependents at the centre of this work. The service aims to help up to 160 people who have used stalking behaviours, and their victims, per year. The package to be delivered by this partnership will include: The package to be delivered by this partnership will include: - Three novel models of rehabilitation, using Psychologist-Led Stalking Interventions (PLSI), for individuals who are using stalking behaviours - Advocacy and support for individuals who have been victims of stalking, and - Professional development, support resources, and new ways of working for professionals who are working with people who have stalked Our team at the University of Southampton, Faculty of Medicine, has been asked to conduct an independent evaluation of the MASP’s activities. We will also conduct primary research to determine whether and how the interventions that MASP deliver are effective in reducing the risk of further stalking behaviour and improving the psychological wellbeing of the person who has stalked. We hope to be able to create new evidence, that can be shared with other agencies, about what works (and how and why) to reduce stalking behaviours. What are the aims? The objectives of the service evaluation and primary research are: 1. To determine whether the effectiveness of the MASP activities: have they been successful in reducing the risk of further stalking behaviour and improving the psychological wellbeing of the person who has used stalking behaviours? 2. To explore the mechanisms and outcomes of the MASP activities: how and why might they impact on the risk of further stalking behaviour? How will the study be carried out? We will analyse routinely-collected, anonymised, data from the MASP partners to determine the effectiveness of the MASP activities. We will also conduct data directly from MASP professionals, MASP clients, and SASS clients, via survey and interview, to explore further how and why the MASP activities might have any effects. What will happen to the findings? The findings will directly inform the future of stalking-related work in Hampshire & Isle of Wight, and elsewhere. We will share the results widely, through publication in peer-reviewed journals, reports to the funder, and presentations at local, national, and international conferences. Where can I get more information? Please contact MASPinfo@soton.ac.uk for more information. Service links: Southern Health Link to Police commissioner website
- Adolescent Resilience to OVercome Adversity: EmpoweRment and intervention development – the ROVER study
fb112e5b-f7be-4ada-a37c-8e959119e1c3 Adolescent Resilience to OVercome Adversity: EmpoweRment and intervention development – the ROVER study Lead applicant: Anne-Sophie Darlington Co-applicants : Professor Graham Roberts , Professor Mary Barker , Dr Ivo Vassilev University of Southampton, Dr Catherine Hill Associate Professor in Child Health at the University of Southampton, Dr Jana Kreppner Associate Professor in Developmental Psychopathology within Psychology at the University of Southampton , Dr Luise Marino , Abigail Oakley Project Summary: Mental health conditions and symptoms in children and young people are increasing. Children and young people (CYP) with a chronic physical health condition often report having mental health problems such as feelings of anxiety and depression. A lot of research has focused on risk – circumstances that make it more likely for young people to experience mental health problems. In this project we want to focus on resilience - the young person’s ability to use their strengths and support from family and friends to overcome challenges in their life. Resilience has not often been a focus of support programmes for CYP with a physical condition. We would like to find out what experiences are common for young people living with physical health conditions, so that we can develop a support programme that applies across Child Health. We will use knowledge from these shared experiences to co-create the support programme with young people – called ‘tools for life’ (suggestion by CYP). We will also partner with national charities (partnerships have already been developed) who have worked with us before and who are very interested in supporting CYP around their mental health. The charity partners could help us to develop support components that are very specific to the condition (for example, fear of cancer coming back), which can be included in the overall support programme. Finally, work with young people has taught us that flexibility is very important: flexibility in when they access support, the way they access it and how it is offered to them. We will work together with young to shape this flexibility in support. The project will have four parts: Part 1 – Finding out what might work: List successful support components from 15 existing summaries of the evidence (reviews of the literature) to date and a report from Wellcome (an independent global charitable foundation which focuses on research), and identify the support elements (e.g., building confidence) which work well, and are acceptable to young people. Part 2 – Developing partnerships: Develop a partnership with local stakeholders (e.g., Paul Hughes and Laura Renishaw-Villier – Hub stakeholders; SolentMind, No Limits) and national charities (e.g., Children’s Cancer and Leukaemia Group, Kidney Care UK, Asthma UK). who can support the development of the support programme, both the general as disease-specific elements. We will hold several workshops with stakeholders to develop the partnership and agree on the goals of the partnership and ways to work together. Part 3 – Developing the support programme: We will co-create (develop together with young people) the support programme– ‘tools for life’ - to increase resilience. We will focus on flexibility in the way the programme is offered to young people, and when young people access the programme, to suit their needs. This flexibility will make young people more likely to use the programme. Part 4: Testing the support programme: We will test the support programme with 30 young people, to find out how many young people use the programme, if the programme is acceptable, how they use the programme, and how much they use the programme. We will also find out what the most important indicators of success are for the programme, such as young people experiencing less symptoms of anxiety and depression, and a better quality of life. What did we find out? The problem: Children and young people with a physical health condition are at a higher risk of developing mental health problems. Existing support programmes do not focus on building resilience – the ability to bounce back and stay mentally strong by using available resources and support networks when facing challenges. Also, many programmes fail to keep young people engaged. This project aimed to explore the support needs of young people and the best way to deliver a programme that builds resilience. What we did: We reviewed existing support programmes from the literature. Then we interviewed young people (32 with a physical health condition, and 25 without, ages 11-18 years), 12 parents of young people aged 11-17 years, and 5 healthcare providers from hospitals, charities and schools across the UK. A range of health conditions were represented, including cancer, heart disease, type 1 diabetes, and asthma. The interviews explored key stressors young people face, the support they need, and preferences for how support should be delivered. What we found: Priority stressors were related to managing the health condition, school/social life, and the future. Key support strategies identified included: 1) Normalisation through connection with other young people (e.g. chat forums), peer training (e.g. ‘living with a health condition’ in school curriculum); 2) Coping, including practical methods (e.g. knowing what to expect during hospital visits), and skills for navigating changes in peer relationships; 3) Prompt reassurance from healthcare providers during hospital visits, via text messaging service, and access to youth workers. Participants preferred a flexible approach that combined online resources with in-person support. Potential impact: Based on our findings, we have developed a prototype support programme that combines online resources with access to healthcare providers for timely reassurance and problem-solving. We are now seeking feedback from young people on this prototype and will use their input to create a full-scale version. If the support programme proves effective, it could help improve the mental health of young people with a physical health condition. What is the impact of this knowledge? • Relationship building: We established strong links with key stakeholders, including clinical colleagues across paediatric specialties at University Hospital Southampton (UHS), representatives from Hampshire and Isle of Wight ICB, Dorset HealthCare, and national and regional disease charities. These collaborations supported participant recruitment and informed intervention development. In the long-term, these relationships will be crucial in ensuring the widespread implementation of the intervention across the health and care system. • Embedding of EDI and PPIE: We conducted extensive PPIE work with community groups, including Winchester Youth Council, Breakout Youth, and Yellow Brick Road, ensuring that the voices of children and young people (CYP) from diverse backgrounds, including those from the LGBTQIA+ community and socioeconomically disadvantaged areas, were represented in the study. • Empowerment of young people: CYP gained a strong sense of empowerment and an enhanced awareness of their own resilience and well-being while contributing to the study. This impact was far-reaching, as the study included patients from UHS paediatric units, and students from local schools (Toynbee and Applemore) and colleges (Eastleigh College and Sparsholt College). • Novel insights into well-being: This study provided novel insights into resilience and well-being for CYP, enriching the broader narrative on CYP mental health. We also co-developed several prototype intervention proposals, which will pave the way for creating an intervention to improve resilience and mental health for young people within healthcare settings. What Next • We are currently: seeking feedback from young people on the prototype resilience intervention preparing a manuscript for submission to a high-impact a peer-reviewed journal. The findings from this study will be inform the development of a grant application, aimed at co-creating the full-scale resilience intervention with input from young people and their support networks. If the intervention proves effective, it will be implemented in practice to bolster mental health outcomes for young people with a physical chronic condition, while also reducing the burden on health and social care services.
- COMPLETED ADOPTED PROJECT: Comparing pharmacological and non-pharmacological interventions for adults with Attention-Deficit/Hyperactivity Disorder (ADHD): systematic review and network meta-analysis
eb290c7e-cd77-4244-9d45-322994af9f69 COMPLETED ADOPTED PROJECT: Comparing pharmacological and non-pharmacological interventions for adults with Attention-Deficit/Hyperactivity Disorder (ADHD): systematic review and network meta-analysis Chief Investigator: Professor Samuele Cortese – University of Southampton Project Team Members: Professor Andrea Cipriani – University of Oxford, Associate Professor Corentin Gosling – University of Paris Nanterre, France, Dr Luis Faraht – University of São Paulo, Brazil / Yale University Child Study Center, USA, Dr Cinzia Del Giovane – University of Modena and Reggio, Italy Start Date: 1st March 2022 End Date: 28th February 2024 Background: It is currently unclear how different treatment options for preschool children with ADHD compare with each other in terms of efficacy and safety. We will use data from available randomised controlled trials (RCTs) and apply an advanced and innovative statistical approach (network meta-analysis) to answer this question. The project started in 2022. Expected outcomes: We will understand how pharmacological and non-pharmacological interventions (including behaviour intervention, family-based systematic approaches and dietetic interventions) compare with each other in terms of their beneficial effects on ADHD symptoms and safety. What did we find out? We found that Stimulant medications and atomoxetine are the only treatments that clearly help reduce the main symptoms of ADHD in the short term, based on both what patients say and what doctors observe. However, people were less likely to stick with atomoxetine than with a placebo (a dummy pill). These medications didn’t show clear benefits for other important things like improving quality of life, and we don’t know much about how well they work in the long run. Non-medication treatments had mixed results depending on who was doing the rating. This study gives the most complete picture so far of how different treatments for adult ADHD compare to each other. It can help guide treatment choices, but those choices should always be based on a careful look at both the benefits and risks — and on what matters most to the individual. • The study is already informing clinical guidelines, e.g., the ongoing guidelines from APOSARD (USA). What will we do Next? Going forwards we will: • Contact guideline bodies in the UK and abroad to bring the network meta-analysis to their attention. • Include the results of the network meta-analysis in a large-scale umbrella review on pharmacological and non- pharmacological treatments for ADHD across the lifespan, and to create a platform to disseminate the findings in a user-friendly way to inform service users, clinicians, and guideline developers. Publications Comparative efficacy and acceptability of pharmacological, psychological, and neurostimulatory interventions for ADHD in adults: a systematic review and component network meta-analysis - ScienceDirect
- Sandra Bartolomeu Pires
Sandra Bartolomeu Pires is a Research Sister in Neurodegenerative diseases at University Hospital Southampton and PhD Candidate at the University of Southampton < Back Don't do it! Sandra Bartolomeu Pires Sandra Bartolomeu Pires is a Research Sister in Neurodegenerative diseases at University Hospital Southampton and PhD Candidate at the University of Southampton From 2018 to 2020 I cowboyed through fellowships and awards, trying to keep a percentage of my time academically focused, in pursuit of the Holy Grail – PhD funding. These varied from 9% to 50% with interim periods of zero (keeping the work going, though). “I just need some funding, my foot in, then I will make it work”. In September 2020, alleluia, PhD scholarship secured! I made a happy dance while holding my 3-year-old daughter and she laughed loudly without understanding why mummy was making such a fuss over a phone call (now that I think about it, she was probably just mocking my lack of dance skills…). I couldn’t believe it. Starting September I would be a PhD student at the University of Southampton! “So how does that work Sandra?”. Well, I get 50% of my time funded to do the PhD. I have funding for four years. “So you need to do a part-time PhD in four years, with a toddler, no family support... (*crickets chirping*) If someone can do it, that person is you!” “Do you have any advice before I start? Something you wished you knew from the beginning?” “Don’t do it”. I have heard this multiple times. Don’t do it; Why would you do it?; Have all your children first, let them go through school, and then do it. Oh please, what do you people know about this? Well, people that are now postdocs and know the pits of despair very well. I really appreciate their advice. They took the time to meet me, share their experience with me, and advise me when I asked for it. But then Seinfeld’s voice in my head “I am special, my mother was right” (yes, I say this joke too many times). “So you need to do a part-time PhD in four years, with a toddler, no family support... If someone can do it that person is you!”“Do you have any advice before I start? Something you wished you knew from the beginning?”“Don’t do it” Our lovely Jamie Stevenson, from the ARC Wessex communications team, challenged us to write how we (PhD scholars) feel in the beginning, and then see how the PhD relationship evolves through the years. The most prevalent thought is “I am not good enough.” – There are plenty of resources and podcasts on imposter syndrome, it’s a big thing, go look it up. My advice on this is something Hugh Kearns said: focus on facts, not feelings. One really needs to be able to balance those internal voices to juggle the daily pressures and workload. This year was more challenging than I could have predicted, worse than the people that had advised me imagined. And I still had it so much easier than many people. In the first COVID wave I paused my SHAPE award, which was so hard to get, to go back full-time clinically. How could I focus knowing all that was happening? So that meant preparing the ARC PhD funding application in my own time, while working full-time in COVID research. In the second wave I thought “Let’s make a tradition out of this!”, deciding to apply for a NIHR Clinical Doctoral Research Fellowship. A lot of my funded PhD time went into preparing this Everest application (while clinically I was once again moved to COVID research but this time inpatients). March was horrible. Deaths from young patients, deaths from colleagues, working clinically in an area out of my comfort zone, and this huge application, the cherry on top of the cake. I was broken and needed help. My supervisors were incredibly supportive, and the Staff helpline was my lifeline. Then, stomach pain. Daily, unable to eat properly without feeling uncomfortable (I LOVE FOOD!!). “That is stress!”. My reply was “I always had a stressful life and never had stomach pain”. Thinking back, it probably is “just” stress. I mean, I am not 20 anymore… After telling my husband “I have sent you an email with my login details, if I end up in the resus room (wouldn’t be the first time), please submit the application. Otherwise, I will come back to haunt you!” I actually managed to submit the application, at 2am. At 9am, all the kind souls that were my signatories and participatories, had signed (Thank you so much!) and off I went to Bournemouth beach with my mother and sister, who had travelled in the middle of a pandemic to see us, and whom I had barely laid eyes on. Freedom Day, 11th June (Sorry, Boris!). I could really have used some holidays then - or an induced coma for a week - but no can do. Diving back into my systematic literature review and thanking my past self for keeping good records. I am now past my first viva/First PhD review progression, straight out of the oven (23rd July 2021) and received overwhelming positive feedback “You seem to think you are delayed Sandra, but you are excelling at the PhD” (I hope the assessor and the supervisors didn’t notice my watery eyes). I write this as I am flying to Portugal to see my lovely family. My daughter and husband have been there for a week. So on the day of my viva I was actually alone all day. Not to worry though, plenty of wine in Portugal (Omeprazole and Rennie in the bag) and time to celebrate with those who support me most on this crazy journey. How was this first academic year? It was absolutely amazing! So (SO) hard, but thrilling, challenging, just the way I like it (I am sure it is some disease and I am just going undiagnosed all these years). The taste of victory is addictive: pressing that “Submit” button, reading my assessor’s report on PGR Tracker, having my long surname in papers (soon to come), the validation from my patient population, my supervisors proud of me, and the hope of making change happen for the best care of patients and carers. I am so excited for the next steps. Knowing that I pushed my boundaries, I am doing what I love, working towards a career that I dream of, surrounded by an incredible support network. For now, out of office “ON” on Hospital and Uni accounts. Breaks are important and I have earned my two weeks off. Let’s see what year 2 brings 😉 “I have sent you an email with my login details, if I end up in the resus room (wouldn’t be the first time), please submit the application. Otherwise, I will come back to haunt you!” Previous Next
- COMPLETED: Development of policy recommendations to reduce the impact of COVID-19 on physical activity and mental health in individuals with multimorbidity: a mixed method study.
b0d87773-4d77-4612-90fe-50bd8c01a4e7 COMPLETED: Development of policy recommendations to reduce the impact of COVID-19 on physical activity and mental health in individuals with multimorbidity: a mixed method study. Principle Investigator – Professor Mari-Carmen Portillo (University of Southampton) Team: Dr Danielle Lambrick (University of Southampton) Dr James Faulkner (University of Winchester) Dr Leire Ambrosio Gutierrez (University of Southampton) Associate Professor Beth Stuart (University of Southampton), Professor Suzanne McDonough (Royal College of Surgeons in Ireland) Professor Melitta McNarry (Swansea University) Dr Jacqui Morris (University of Dundee) Dr James Steele (Solent University) Mr Eric Compton (PPI Representative) Ms Katherine Baker (University Hospital Southampton) Mr Jack Shakespeare (UK Active) Dr Matthew Wade (UK Active) Start: January 2021 End: June 2022 Aim of the research: To understand the impact of COVID-19 and government restrictions on physical activity and mental health of people with long-term conditions, and propose recommendations to support and sustain their physical activity during and after COVID-19 or other pandemics. The findings of our study will inform stakeholder events across the UK including participants and policy-makers to draw action plans together. Background to the research: People, including those with long-term conditions, were told to use physical distancing, self-isolation and/or shielding during COVID-19 to protect themselves and others. Government guidance on physical activity may or may not have explained to people how to be physically active and take part in exercise during COVID-19. Physical activity has a positive effect on physical and mental health, so understanding the impact of COVID-19 on physical activity behaviours (amount, type and intensity of physical activity, resources) of people with or without long-term conditions is important. What did we find out? General physical activity (PA) guidelines are not suitable for people with long term conditions (LTCs). Existing generic PA guidelines by the World Health Organization are not suitable for everyone because differences in age, gender, physical abilities, PA preferences, and LTC severity may affect why people choose not to exercise Online resources are not accessible for all populations. During COVID-19 pandemic, provision of PA information was most commonly available online. Hence, PA programmes designed for the general population may not be appropriate for clinical groups from a safety perspective People living with one LTC engaged in more moderate and high intensity PA compared to those with multiple LTCs People living with one LTC present better overall quality of life and lower anxiety and depression than those living with multiple LTCs Physical activity guidelines should be specific. Local and national government guidelines were identified as unclear for those living with LTCs and should be more specific regarding what people who were shielding could and could not do What difference could this make? Developing health and social care strategies to sustain PA, optimise online/offline resources and communication to promote individuals with LTCs can remain physically active Helping policy and guidelines development, particularly for those living with multiple LTCs Why is this important? Understanding the impact of COVID-19 on physical activity and mental health is beneficial to informing LTC policy development, to better support people living with LTCs to be physically active during future periods of mobility restriction and/or pandemics Findings emerged in this project, will support The development of more tailored and person-centred physical activity (PA) guidelines. in the case of individuals who are advised to shield, guidance should be provided on how they can be physically active within and around their homes. For example, tailor their PA according to how they manage and cope with their LTC and its changeability is recommended Prioritising vulnerable groups is recommended. Therefore, people with LTCs are an important and specific group to consider when designing and delivering PA guidelines during shielding or social-distancing periods How we are sharing our findings Policy recommendations have been developed that capture strategies to sustain Physical Activity and optimise online/offline resources and communication to promote individuals with Long Term Conditions can remain physically active. Policy Brief .pdf Download PDF • 3.53MB Findings from the quantitative and qualitative phase of the project informed stakeholder engagement activities across all counties of the UK. Representatives from macro, meso and micro levels were approached as well as Patients and Public contributors. Publication: Full article: Accessibility and applicability of physical activity guidelines and recommendations for adults living with long term conditions during COVID-19 (tandfonline.com) https://doi.org/10.1371/journal.pone.0285785 Conference: Presented mixed methods results of the project in an international congress - 7th World conference on qualitative research (25-27 January 2023) Development of recommendations co-developed at event January 2023 Podcast planned for 2023
- COMPLETED ADOPTED PROJECT: Evaluating the Operation Encompass Scheme: A Qualitative Scoping Study
5fde61a4-c4bf-4d47-8ae3-3eed94045497 COMPLETED ADOPTED PROJECT: Evaluating the Operation Encompass Scheme: A Qualitative Scoping Study Principal Investigator: Dr Sara Morgan Project Team: Dr Maddy Greville Harris (Bournemouth University) Start Date: 1st August 2019 End Date: 21st December 2020 Background For young people, experience of domestic violence or abuse (DVA) is associated with an increased likelihood of experiencing mental health problems, poor academic attainment and later criminal or violent behaviour. The importance of early identification and support for children experiencing DVA is therefore paramount. One safeguarding scheme that is implemented in the UK is Operation Encompass (OE). This scheme involves partnership working between police and schools, to ensure that school safeguarding leads are informed of incidents of DVA involving children from their schools by the start of the next school day. Whilst the OE scheme has been implemented nationally, there is no existing published research exploring implementation of the scheme. What we did This qualitative scoping study carried out semi-structured interviews with 13 police workers and 12 school designated safeguarding leads. Thematic analysis explored three main themes: 1) Information sharing: “the beauty of Encompass is that it’s a conversation” , describing, for example, how OE is invaluable, although seen by some as resource-intensive 2) Facilitators and barriers of the OE scheme , such as staff responsiveness, funding, and resources 3) School support and outcomes: “Now they knew about it, they could go on to help” , such as the usefulness of identifying DVA cases, providing family and wellbeing support. While the OE scheme was considered invaluable in identifying and supporting children following OE, further research into the scheme could assist in a better understanding of how to optimise support for children in schools following a notification of an incidence of DVA. What did we find out? We identified three key themes from our interviews with educators and police involved in delivering Operation Encompass (OE). These were 1. Parameters of the scheme: defining DVA; stages to police implementation; extent and scope of information sharing; expanding and tailoring the scheme. 2. Barriers and facilitators: sustainability; attitudes towards the scheme; compliance and engagement; providing useful, timely contact; systemic promotion, and funding and resources. 3. Outcomes of OE and school support making allowances; check-in and monitoring; providing a safe nurture space; family work, and prioritising wellbeing. There was overwhelming support for the OE scheme from police workers and school safeguarding leads, although several potential challenges to implementation were discussed. The parameters of the OE scheme across regions were discussed, with debate around the content of OE notifications, and how best this should be shared. Although making contact with schools was sometimes challenging, schools agreed that timely information sharing via the OE scheme was useful for providing support to children and their families. Schools discussed the types of support they offered following and OE notification, such as checking in with the child and/or family, and providing a nurture space. Several key recommendations were made, such as the potential usefulness of sharing best practice between schools and the importance of promotion and awareness of the OE scheme. What did we do with this new knowledge? • Findings from the evaluation have been cited in a recent impact report from Operation Encompass, which goes out to all areas in England and Wales delivering OE OE-impact-Report-2023.pdf • The findings on the OE scheme have implications on best practice across police, education, social care settings. • The work was presented through the Association for Children and Adolescent Mental Health Supporting children and families experiencing domestic violence: A Devon and Cornwall perspective - Recording - ACAMH • The work was also used to inform a further grant application on children experiencing domestic abuse and led to a funded UKRI ESRC-funded PhD project by Miss Rebecca Harris | University of Southampton What next? Through my work evaluating violence prevention programmes, and how to support those experiencing domestic abuse, including this evaluation of OE, I’m looking to pursue further research work that understands how to prevent the intergenerational cycle of domestic abuse and how to prevent victims being revictimized or becoming perpetrators as adults. This will involve work with the community in non NHS settings, including partnerships with the police, education, social care and the healthcare system.
- ADOPTED: Community Alternatives to aCute Hospitalisation for Older People who have Fallen (CAtCH-Falls)
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.
- CHAMPION: Children whose mothers are involved in the criminal justice system in Dorset & Hampshire: developing health and social care outcome indicators
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.
- COMPLETED: Testing the living with chronic illness scale
35fc5ade-22b2-4685-9329-21c42b28a888 COMPLETED: Testing the living with chronic illness scale Validation of the living with chronic illness scale in an English-speaking population with Long-term conditions Principal Investigator: Professor Mari-Carmen Portillo (Professor of Long-Term Conditions. School of Health Sciences. University of Southampton) Team members: Dr Kelly Hislop-Lennie (Principal Investigator). Senior Lecturer in Adult Nursing. University of Bournemouth. Dr Leire Ambrosio. Senior Research Fellow. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton. Ms Hannah Barker. PhD student at the School of Geography, University of Southampton. Dr David Culliford. Principal Research Fellow and Senior Medical Statistician. School of Health Sciences, University of Southampton. Dr Emily Arden-Close. Principal Academic in the Department of Psychology, Bournemouth University. Dr Jo Hope. Lecturer. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton. Dr James Bennet. Primary Care Research Locality Lead, Clinical Research Network Wessex. Dr Simon Fraser. Associate Professor of Public Health. University of Southampton Dr Corine Driessens. Senior Research Fellow in Statistics. NIHR Applied Research Collaboration Wessex, University of Southampton. Dr Nestor Serrano-Fuentes. Senior Research Fellow. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton. Start: 1 October 2019 Ends: 30 September 2021 Project Partners: Clinical Research Network (CRN) Wessex, Primary Care Dorset, Bournemouth University, University Hospital Southampton NHS Foundation Trust NHS: Alresford Surgery. Alresford, Angel Hill Surgery. Bury St. Edmunds, Banbury Cross Health Centre. Oxfordshire, Buchanan Road Surgery. Sheffield, Buttercross Health Centre. Somerton, Glastonbury Health Centre. Glastonbury, Heeley Green Surgery. Sheffield, Ixworth Surgery. Ixworth, Newquay Health Centre. Newquay, Oaks Healthcare. Waterlooville, Park Road Surgery. Teddington, Rosedale Surgery. Lowestoft, Shreeji Medical Centre. Slough, Swanage Health Centre. Swanage, The Park Medical Practice. Shepton Mallet, Trafalgar Medical Group Practice. Portsmouth, Wareham Surgery. Wareham, White Horse Medical Practice. Faringdon. Charity Partners: Parkinson’s UK , Diabetes UK and Asthma UK What did we find out? The scale successfully measures individuals’ experiences of living with one or more long-term conditions We found that the scale was acceptable to 577 people from the United Kingdom living with different long-term conditions. The results recommend shortening the original version of the scale for better use in clinical practice. What difference can this new knowledge make? The scale does not focus on the disease but on how the person lives with the disease; therefore, identifying physical, emotional, spiritual, and social complex needs and what is meaningful and relevant to people. Utilising the scale as an assessment and diagnostic tool in primary care could result in better health care. For example, it could support the development of more comprehensive and individualised care plans, a more effective and directed referral to specialists and community support groups, and regular monitoring. Its use could bridge health and social care services, developing and evaluating care pathways based on the commonalities across conditions (not medical diagnosis), and improving patient experience. Why is this important? This work has led to a new understanding of key elements that health and social care interventions must address to improve the lives of people living with long-term conditions. It highlights the need to focus on capturing the things that matter to people living with one or more long-term conditions in the UK. What next? The next step is to carry out a feasibility implementation study of the scale in clinical practice, particularly for people living with type 2 diabetes. The use of this scale in clinical practice has the potential to improve the daily lives of people with multiple conditions, improving their quality of life and well-being. It can also help improve referral processes and coordinate care. Outputs from research: Ambrosio, L., Hislop-Lennie, K., Serrano-Fuentes, N., Driessens, C., & Portillo, M. C. (2023). First validation study of the living with long term conditions scale (LwLTCs) among English-speaking population living with Parkinson's disease. Health and quality of life outcomes, 21(1), 69. https://doi.org/10.1186/s12955-023-02154-6 Ambrosio, L., Hislop-Lennie, K., Barker, H., Culliford, D., & Portillo, M. C. (2021). Living with Long term condition Scale: A pilot validation study of a new person centred tool in the UK. Nursing open, 8(4), 1909–1919. https://doi.org/10.1002/nop2.859 Ambrosio L, Navarta-Sánchez MV, Portillo MC, Martin-Lanas R, Recio M, Riverol M. Psychosocial Adjustment to Illness Scale in family caregivers of patients with Parkinson's Disease: Spanish validation study. Health Soc Care Community. 2021 Jul;29(4):1030-1040. https://doi.org/10.1111/hsc.13137 Ambrosio L, Hislop-Lennie K, Serrano-Fuentes N, Driessens C, Portillo MC. Psychometric properties of the living with long term conditions scale in an English-speaking population living with long term conditions in the UK. BMJ Open. 2024 Jan 10;14(1):e077978. https://doi.org/10.1136/bmjopen-2023-077978 Background and origina lay summary Long term conditions (LTCs) are a worldwide challenge because of their complications, increasing numbers, costs and impact on people’s lives. In order to develop interventions that improve the adaptation to illness and quality of life, we need appropriate, reliable and valid tools, which reflect cultural and language diversities and individual needs. This would benefit both patients and health/social care professionals in the management of LTC, by allowing the patients a way to express their needs and therefore, allow the health/social care professional to direct the patient to specific, relevant resources. The present study aims to produce an English version of the Living with Chronic Illness Scale and establish if it can be useful and applicable to English speaking people with LTCs in the UK. The Living with Chronic Illness Scale is the only available tool, which comprehensively evaluates the experience of living with a long-term condition, focusing on the person and not on the disease. This scale was created after previous research, and successfully used with people with Parkinson’s Disease from Spain and South America, in Spanish. In this study we will first translate the Spanish version of the scale into English, making any necessary cultural changes. After this, we will test the understanding of the approved English version with 15 people with LTCs. Then, we will use the final English version of the scale with at least 1,650 people with different LTCs in community settings from Wessex. Apart from the Living with Chronic Illness Scale, we will ask participants about perceived social support, life satisfaction, quality of life, and the perceived severity of their LTC(s), using tools for English speakers. Finally, 2 discussion groups will take place with people with LTC, 2 with family-carers and 2 with health professionals to explore and compare their views about the usefulness of this scale in the daily management of LTC. People with long-term conditions and associations have contributed to the choice of topic, research and dissemination plan.