Research Fellow < Back Stephanie Hughes Research Fellow Ageing and Dementia Steph Hughes is a Research Fellow in the ARC Wessex Mental Health Hub at The University of Southampton conducting research into alcohol use disorder in older adults. Steph has a PhD from The University of Southampton where she explored the impact of significant others on men undergoing active surveillance for prostate cancer. Steph has expertise in qualitative research, self-management of illness and intervention development. Past projects span topics such as irritable bowel syndrome, chronic pain, weight management and primary care communication. Previous Next

bc679d13-74ba-4311-9808-713cccad3190 ADOPTED PROJECT: DIGNIFIE Gender-seNsitive evaluatIon oF a prIson alternativE DIGNIFIE: Gender-seNsitive evaluatIon oF a prIson alternativE - (intervention is known as Hope Street) Chief Investigator: Dr Emma Plugge – University of Southampton Project Team Members: Ms Donna Gipson – Empowering People: Inspiring Change (EP:IC) , Ms Paula Harriott – Prison Reform Trust and EP:IC , Dr Kathy Kendall – University of Southampton, Professor Julie Parkes – University of Southampton, Dr Sara Morgan – University of Southampton Professor James Raftery – University of Southampton, Dr Lucy Wainwright Revolving Doors and EP:IC , Dr Donna Arrondelle - University of Southampton, Ms Jess Boxall - University of Southampton, Ms Natalie Austin - University of Southampton, Ms Naomi Gadian - University of Southampton Project Partner: Empowering People: Inspiring Change (EP:IC) Background: This evaluation seeks to determine whether women’s health and wellbeing, social and criminal justice outcomes are improved when they are placed in a community based residential facility (Hope Street) rather than being imprisoned. The Ministry of Justice’s 2018 Female Offender Strategy sets out plans to improve outcomes for women in the community and custody. It aspires to ensure that fewer women are imprisoned and recommends the move to community management of women in contact with the criminal justice system (CJS), including residential women’s centres with places for women to bring their children. It is in this context that Hope Street, the community alternative to imprisonment, has been developed in Southampton. Women in contact with the CJS are some of the most disadvantaged people in society. One third of them will have been in care as children, two thirds live with ongoing domestic abuse and most will have experienced poverty. They have lower basic skills attainment than the general population, are more likely to be unemployed and to be in insecure housing. Their health is considerably poorer than that of women in the community; for example, the standardised mortality ratio for suicide is 20 times higher in imprisoned women than in the general population. This mixed methods study comprises qualitative research, a prospective cohort study and health economic evaluation. It started in 2021 and will be completed in 2027.

74810517-8b1b-4b38-87c8-8743533a5bbb Developing a web resource to support families bereaved during COVID-19 Principal Investigators : Dr Natasha Campling and Dr Michelle Myall Team Members : Dr Natasha Campling (Lecturer & Senior Research Fellow, School of Health Sciences, University of Southampton; Dr Michelle Myall (Senior Research & Implementation Fellow, School of Health Sciences, University of Southampton); Dr Susi Lund (Visiting Research Fellow, School of Health Sciences, University of Southampton); Dr Alison Allam (Patient and Public Representative) Start: 1 January 2021 Finish: 31 December 2022 Project Partners: Winchester Bereavement Support; The Bereavement Centre (Southern CO-OP) Plain English Summary Why is the study needed? The current coronavirus (COVID-19) pandemic has led to increasing numbers of people who have experienced, or are facing, bereavement both in the UK and worldwide. We know that bereavement can seriously affect people’s health. Bereaved people are more likely to experience serious physical and psychological health consequences, such as heart disease and anxiety and depression, particularly in the first year of losing someone close to them. There are some things that can help prevent the health effects caused by grief. For example, being able to see a person receive good end of life care, being prepared for the death of a person, attending the funeral and having the support of family members and friends. During COVID-19 many families and others important to a dying person have not been present during end of life care and death has occurred suddenly. Social distancing restrictions have prevented the support often provided through families and friends coming together. Restrictions applied to funerals have prevented some families being able to attend the funeral of a relative. All of this can make it difficult for people to make sense of what has happened and to look for support to help them with their loss and grief. However, traditional ways of providing bereavement support (face-to-face or by telephone or video) may not be possible because of an increase in demand for support. A family focused online support resource, which considers grief in the context of the family, offers a way of helping people to deal with their bereavement in these unusual times. What did we do and what did we find out? Families, friends and support networks are key to managing bereavement. COVID-19 social restrictions prevented families and friends from being with the dying and participating in usual rituals to honour the dead. This resulted in social disconnection, feelings of guilt, and difficulty in making sense of the death and reconstructing relationships. In response to this context a theoretically informed, co-produced web-resource to facilitate meaning-making, which situates bereavement in the context of family and friends, was developed. We conducted a survey of bereaved people and bereavement professionals to understand how the pandemic had influenced their bereavement experiences and for their views on the key elements of a web-resource. Findings from the survey along with those from a literature review were shared at an online workshop with bereavement professionals to generate agreement on the content and format of the resource. We worked with them and bereaved people to co-produce the resource which was theoretically informed by the Dual Process Model and Family Sense of Coherence. The resource was piloted to gain user feedback which was used to further refine the website. Following these refinements, the website was evaluated via interviews and focus groups with bereaved people and bereavement professionals. Survey respondents reported the pandemic negatively affected bereavement (guilt, isolation, inability to bear witness) but also presented new opportunities to celebrate the deceased and support the bereaved (new funeral rituals, technology, remote contact, social acknowledgement of grief). Sense-making and managing bereavement were helped through information-giving, support networks, and relocating the person within the family context. A web-resource to facilitate collective grief was viewed positively and endorsed. Key content including family activities to stimulate support, information regarding the range of grief experience and dealing with the practicalities, along with other sources of support was agreed by workshop participants to form the basis of the resource. The Families and Friends in Bereavement website is a novel resource which encourages consideration of bereavement in the context of close social networks. It enables grief to be understood and managed within a shared experience by promoting communication and meaning-making.ur evaluation data demonstrates that the Families and Friends in Bereavement website: •Normalises the range of grief experiences ( about grief page) •Gives permission not to have to grieve all the time ( space to pause page, Dual Process Model theoretical underpinning) •Sits well with the nature of grief – can be accessed in small ‘chunks’ (when concentration is limited), dipped into and out over time (as there is no timeline to grief) •Is therapeutic in itself – calming colours / images and supportive, gentle text, encourages reflection What difference will this Knowledge make? •Contribution to understanding experiences and support needs of bereaved people during COVID-19 and beyond •Using theory to explain these experiences and develop a resource to meet the needs of bereaved people. •The resource makes an important difference to the health and wellbeing of bereaved people within the local population and beyond, regionally and nationally. Addresses the gap in existing support for those experiencing non-complex grief. •The website is a useful resource for professionals to signpost people to (something for their toolbox). It offers a useful addition for the current context of tightened / restricted professional resources and bereavement service cuts. Next Steps •Pursue impact funding . •Harness the interest of a charity to host the resource in the longer term. •Continue to develop partnership with the national funeral director trade associations. •Develop collaborative funding proposal for submission to NIHR palliative and end of life care call (Public Health stream) to build on this work. https://familiesandfriendsinbereavement.org.uk/ Publications https://doi.org/10.12688/f1000research.134193.2

6e7ee8b2-1a6e-457b-9b3c-d7c31dc9079f ADOPTED: CEDA ‘Making the invisible visible’: identifying and responding to unpaid carers who experience domestic abuse from end-of-life care recipients Chief Investigators: Dr Michelle Myall , School of Health Sciences, University of Southampton and Dr Sandi Dheensa, University of Bristol. Team: Dr Susi Lund, Dr Sophia Taylor and Dr Becky Foster , School of Health Sciences, University of Southampton. Professor Siobhan O'Dwyer, University of Birmingham. Ms Katy Styles, We Care Campaign. Ms Marion Goodchild, Public and Patient Contributor. Summary Globally, home is most people’s preferred place of death. This relies on physical, emotional and practical support from unpaid carers e.g., family members, friends, or neighbours for people at the end-of-life (EOL) who are recognised as the most important factor in delivering at-home end-of-life care (EOLC). In England approximately 500,000 people provide unpaid EOLC. Half of unpaid carers provide up to 19 hours of care per week , increasing to an average of 70 hours at EOL. Unpaid carers make crucial contributions to EOLC, off-setting health service costs and enabling patient choice. Many carers do not identify as ‘carers’ and the caring role is often unplanned. Whether they choose the role or not, the demands of EOLC often exceed carers’ capacity to cope and are associated with poor physical and mental health, social isolation and financial insecurity. For some carers, suicide and homicide-suicide can seem like the only way out. There is clear evidence that EOL carers experience worse outcomes compared with those who care for someone who is not at EOL, and these outcomes increase in line with number of care hours provided and severity of the person’s illness . These negative consequences are compounded for EOL carers who are female, older, disabled, migrants, black, or minority ethnic. While the general toll of caring is well documented, little attention has been paid to the impact of caring or a person at EOL who is, or has previously been, abusive. Research that understands carers survivors’ experiences, and informs policy and practice for improved support is imperative. This research is a 24-month qualitative study comprising three linked phases. A qualitative approach will enable a sensitive and nuanced exploration of complex experiences and the relational aspects of domestic abuse (DA) in EOL caring relationships . We will work in partnership with people with lived experience, HSCPs, specialist DA organisations and key public service representatives through a Community of Practice (CoP) to co-produce knowledge and guidance to help HSCPs identify and respond to carer-survivors and generate recommendations to inform policy and practice. This study will generate important new insights into carer-survivor experiences. This is essential to ensure improved outcomes and to address gaps in support for carer-survivors during the EOL period and through to bereavement. The study will also produce resources for (Health and Social Care Professionals)HSCPs to identify and respond to DA, with the goal of improving carer experience, wellbeing, and safety. The study is part of a programme of research focused on domestic abuse where it co-exists with long-term/life-limiting illness and end of life. In 2024, we co-developed the DALLI toolkit, a resource for health and social care professionals working with people at end-of-life who are at risk of domestic abuse. The DALLI toolkit is hosted by Marie Curie and has been adopted in hospices, local authorities, integrated care boards and domestic abuse services in the UK and has attracted international interest. If you would like to find out more please click here: COMPLETED: Domestic Abuse and Life-Limiting Illness: identifying and supporting adults at risk (DALLI Study)

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Senior Research Assistant < Back Gabrielle Palermo Senior Research Assistant Ageing and Dementia Gabrielle Palermo is a Senior Research Assistant at the NIHR ARC Wessex Mental Health Hub, University of Southampton. She supports quantitative research on alcohol use disorder in older adults and contributes to other Hub projects involving complex routine datasets, including the OLA study. With over 20 years of experience in applied statistics, Gabrielle specialises in quantitative methods for epidemiological, socioeconomic, and public health research, particularly in the analysis of survey and administrative data. Her expertise includes multilevel modelling, complex survey design for cross-sectional and longitudinal data, data cleaning and linkage, and the treatment of missing data. She holds an MSc in Population Studies and a BSc in Statistics from ENCE–IBGE (Brazil). Her doctoral research focuses on statistical methodologies for unbalanced longitudinal data in sample-based educational panel studies, with emphasis on school effectiveness and pupil mobility. Since 2022, she has worked across multiple departments within the Faculty of Medicine at the University of Southampton, contributing to research in epidemiology and clinical trials. Previous Next

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< Back Brad Grecco Marketing Associate This is placeholder text. To change this content, double-click on the element and click Change Content. Want to view and manage all your collections? Click on the Content Manager button in the Add panel on the left. Here, you can make changes to your content, add new fields, create dynamic pages and more. Your collection is already set up for you with fields and content. Add your own content or import it from a CSV file. Add fields for any type of content you want to display, such as rich text, images, and videos. Be sure to click Sync after making changes in a collection, so visitors can see your newest content on your live site. info@mysite.com 123-456-7890

< Back Brian Chung VP Product This is placeholder text. To change this content, double-click on the element and click Change Content. Want to view and manage all your collections? Click on the Content Manager button in the Add panel on the left. Here, you can make changes to your content, add new fields, create dynamic pages and more. Your collection is already set up for you with fields and content. Add your own content or import it from a CSV file. Add fields for any type of content you want to display, such as rich text, images, and videos. Be sure to click Sync after making changes in a collection, so visitors can see your newest content on your live site. info@mysite.com 123-456-7890

< Back Ashley Amerson Product Manager This is placeholder text. To change this content, double-click on the element and click Change Content. Want to view and manage all your collections? Click on the Content Manager button in the Add panel on the left. Here, you can make changes to your content, add new fields, create dynamic pages and more. Your collection is already set up for you with fields and content. Add your own content or import it from a CSV file. Add fields for any type of content you want to display, such as rich text, images, and videos. Be sure to click Sync after making changes in a collection, so visitors can see your newest content on your live site. info@mysite.com 123-456-7890

< Back Kelly Parker HR Representative This is placeholder text. To change this content, double-click on the element and click Change Content. Want to view and manage all your collections? Click on the Content Manager button in the Add panel on the left. Here, you can make changes to your content, add new fields, create dynamic pages and more. Your collection is already set up for you with fields and content. Add your own content or import it from a CSV file. Add fields for any type of content you want to display, such as rich text, images, and videos. Be sure to click Sync after making changes in a collection, so visitors can see your newest content on your live site. info@mysite.com 123-456-7890