Co-creating guidelines for professionals supporting unpaid carers experiencing domestic abuse from perpetrators who are at end-of-life: a Community of Practice approach

Myall, Michelle, Dheensa, Sandi, Goodchild, Marion, Lund, Susi, O'Dwyer, Siobhan, Styles, Katy, Taylor, Sophia and Foster, Becky (2026) Co-creating guidelines for professionals supporting unpaid carers experiencing domestic abuse from perpetrators who are at end-of-life: a Community of Practice approach. European Association of Palliative Care World Congress, , Prague, Czech Republic. 13 - 16 May 2026.

Abstract

Background: existing evidence suggests that some unpaid carers may be at risk of domestic abuse from the person they care for. In England and Wales, one in ten domestic-homicide victims are female carers, with care-recipients perpetrating over 50% of cases. Many people at end-of-life (within the last year of life) depend on an unpaid carer to support them but little is known about the experiences of carers who are abused by perpetrators who are at end-of-life. In addition, health and social care professionals frequently report uncertainty about how to identify, respond to, and support carers in abusive situations.

Aim: we describe how a Community of Practice (CoP) is working together to develop evidence-based, practice-relevant guidelines to support professionals working with this vulnerable group. The CoP is part of the qualitative Carers Experiencing Domestic Abuse (CEDA) study, which is also gathering evidence on carers’ experiences and support needs through a literature review, interviews and focus groups.

Methods: using a CoP model, we brought together practitioners, researchers, carers who are victim-survivors, organisations that support and advocate for unpaid carers, and domestic abuse specialists, to explore the needs, barriers, and opportunities for improving practice. The CoP meets regularly to provide feedback, based on professional expertise and lived experience, informing the co-production of guidance for professionals supporting carers experiencing domestic abuse.

Results: this presentation will outline the processes involved in setting up and running the CoP, with particular reference to the sensitive nature of the topic: For example, ensuring participant and researcher safety and choosing appropriate language for recruitment materials. It will highlight key findings and share progress on the draft guidance.

Discussion: we will reflect on the value of participatory approaches in developing meaningful resources for front-line practice in this under-researched area.

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Contributors

Author: Michelle Myall

Author: Sophia Taylor

Author: Becky Foster

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