Making the invisible visible: unpaid carers who experience domestic abuse from end-of-life care recipients: the CEDA study

Myall, Michelle, Lund, Susi and Taylor, Sophia (2025) Making the invisible visible: unpaid carers who experience domestic abuse from end-of-life care recipients: the CEDA study. NIHR School for Social Care Research Conference, Milner Hotel, York, United Kingdom. 20 - 21 May 2025.

Abstract

Background: in England and Wales, one in five adults have experienced domestic abuse. This equates to more than 2.4 million people. Many people at end-of-life (EOL), or living with a life-limiting-illness, depend on an unpaid carer, often a family member to support them emotionally and with day-to-day living. Unpaid carers make crucial contributions to end-of-life care (EOLC), off-setting health and social care costs and enabling patient choice. In England, more than half a million people provide unpaid EOLC; the role is often unplanned and associated with poor health, and adverse social and financial outcomes. Carers can also be at risk of domestic abuse from the person for whom they provide EOLC. In 2021/2022 in the UK, one in ten domestic homicide victims was a carer, with the care-recipient being the perpetrator in more than 50% of cases.

Health and social care professionals (HSCPs) are well placed to support carers experiencing domestic abuse. However, they often lack understanding and confidence to ask about or respond to abuse when encountered in practice. Gaps in training and lack of guidance on domestic abuse in the EOL context have resulted in professionals being under-prepared to fully comprehend the complexities of abuse in caring relationships. This has led to calls for mandatory training for frontline workers, especially those in social care roles. To date, little attention has been paid to unpaid carers’ experiences of domestic abuse which is a prerequisite for developing targeted interventions and support for EOL carers based on their specific needs and characteristics.

To introduce the CEDA study which explores experiences and support needs of adult carers who have been abused by an EOL care-recipient and will use findings to co-produce a resource for HSCPs to increase their understanding and confidence and improve wellbeing and safety for EOL carers.

Methodology and Methods: a 24 month qualitative study using co-production methodology and working in partnership with people with lived experience, community groups and organisations, HSCPs, specialist domestic abuse organisations and key public service representatives through a Community of Practice (CoP). This will enable inclusion of diverse participants, the voices of those from marginalized and disadvantaged communities to be listened to and heard and who are best placed to advise how services on how to respond. Undertaking this work through the CoP facilitates partnership working, strengthening relationships between health and social care, the third sector and voluntary services.
Interviews will explore adult carer victims’ experiences and focus groups/interviews will capture the views and experiences of HSCPs and other key stakeholders. Data will be analysed using the Framework approach and informed by Hill-Collins and Bilge’s theoretical framework to enable an intersectional understanding of the issues.

Anticipated Outcomes: findings will provide a robust evidence base and offer new insights to underpin guidance for HSCPs on how to identify and respond to carers experiencing domestic abuse in the EOL context, including referral pathways, and empowering carers to manage the situation as they wish.

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Contributors

Author: Michelle Myall

Author: Sophia Taylor

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