Principal Investigator: Dr Michelle Myall

Team Members: Dr Michelle Myall (Senior Research & Implementation Fellow, School of Health Sciences, University of Southampton); Dr Sally Wheelwright (Senior Research Fellow, School of Health Sciences, University of Southampton); Dr Susi Lund (Visiting Research Fellow, School of Health Sciences, University of Southampton); Karen Drake (Matron in Specialist Palliative Care, Salisbury NHS Foundation Trust); Sally Dace (Patient and Public Representative)

Start: 1 January 2021 Ends: 30 September 2024

Project Partners: University of Southampton; University Hospital Southampton NHS Foundation Trust (UHS); Weldmar Hospicecare, Dorset; Salisbury NHS Foundation Trust; Yellow Door Domestic and Sexual Abuse Charity; Southampton City Council; Oakshealth Care, Waterlooville, Hampshire; Citizens Advice Southampton; Hampshire Macmillan Cancer Support Citizens Advice Service

Plain English Summary

In the UK, domestic abuse (DA) is defined as “any incidents, or patterns of incidents, of controlling, coercive, or threatening behaviour, violence or abuse between those aged 16 or over, who are or have been, intimate partners or family members regardless of gender or sexuality. The abuse can encompass, but is not limited to psychological, physical, sexual, financial and emotional”. In England and Wales an estimated 2.4 million adults experienced DA in 2019 and the cost to health services is estimated at £2.3 billion per year.

People living with a life-limiting illness (LLI), for example, cancer, motor neurone disease (MND), and heart failure are at increased risk of DA because they are vulnerable, frail, isolated and dependent on others. The abuser is likely to be their carer. They will spend long periods of time in the home, in close proximity to abusers, and may have difficulty seeking help and support. This situation will have worsened during the COVID-19 pandemic because those with a LLI have been required to shield, increasing their isolation.  To date little attention has been paid to the particular support needs of this group.

This study has been developed in collaboration with health and social care professionals, managers, safeguarding leads, DA service managers, third-sector organisations, and patient/public representatives (PPI). They have told us that identifying patients with LLIs, who may be experiencing DA, is a real need and recognise the importance of working together to improve and provide support. Healthcare professionals (HCPs) have told us they are unsure how to identify where DA may be happening for people with LLIs and how they can best manage the specific and complex needs of this group. While there are existing resources available to screen for DA and provide support, the people we spoke to told us that that these more general tools are not appropriate for meeting the particular needs of people with a LLI.

The study will begin in January 2020 and end in the summer of 2023. We will develop a resource to help HCPs identify and provide support for those with a LLI and affected by DA. To do this we need to find out about what is already available and identify examples of good practice. We will look at published research, unpublished sources and relevant policy documents, map existing services, and carry out interviews with key stakeholders. We will then work with stakeholders to develop the resource and carry out some preliminary testing in healthcare settings.

From the start, we will work with ARC Wessex, our project partners and PPI representatives to identify who we need to engage and how to reach them. We will hold a dissemination event at the end of the study to share the resource with relevant stakeholders. Findings will be provided in a short report to project partners, social media posts for the wider public, and attendance at events such as Dying Matters Awareness Week. We will also publish papers in academic journals and present at relevant conferences. Additional funding will be sought to commission a play based on findings from the research.