Chief Investigators: Dr Michelle Myall, School of Health Sciences, University of Southampton and Dr Sandi Dheensa, University of Bristol.

Team: Dr Susi Lund and Dr Sophia Taylor, 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.