Domestic Abuse and Life-Limiting Illness: identifying and supporting adults at risk (DALLI Study)
Principal Investigator: Dr Michelle Myall
Team Members: Dr Michelle Myall (Principal Research Fellow ARC Wessex, School of Health Sciences, University of Southampton); Sophia Taylor (Senior Research Assistant, 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; The Rowans Hospice, Portsmouth; Body Positive, Dorset; Citizens Advice Southampton; Hampshire Macmillan Cancer Support Citizens Advice Service
Summary of Findings
Why the study is important
In England and Wales an estimated 2.4 million adults experience domestic abuse (DA). People living with a life-limiting illness (LLI) are at increased risk of DA because they are vulnerable, frail, isolated and dependent on others. They may spend long periods of time in the home, in close proximity to the abuser, who is often their carer, and have difficulty accessing help and support. To date, little attention has been paid to the experiences of those living with a life-limiting-illness who are victims of DA, their specific needs and the extent to which these are being met by statutory and specialist and non-specialist services. Furthermore, we know little about the views and experiences of health and social care professionals who provide support to them.
What we did
Between 2021-2024 we conducted the mixed-method DALLI (Domestic Abuse and Life-Limiting Illness) study, which explored DA where it co-exists with LLI. Initially we carried out scoping work comprising a literature review; survey to map local service provision; and held informal discussions with those with lived experience, health and social care professionals working in hospice and palliative care services, and specialist domestic abuse organisations. This helped to identify research priorities and focus of the study.
What we found
Our scoping review highlighted the impact that DA has on mental health and wellbeing which can result in delays in screening, leading to late diagnosis and an illness advancing with only palliative rather than curable treatments being available. We know many people living with a LLI and at end-of-life are likely to access palliative and other health and care services frequently. Trusted relationships with healthcare professionals (HCP), enhanced by continuity of care can lead to the development of interpersonal trust between patient and HCP, increasing the likelihood of disclosures of abuse. However, interviews with health and social care professionals highlighted a lack confidence to ask about abuse, and challenges with recognising signs of abuse amongst the complexities of DA in the LLI context. This highlighted the need for increased training, education, and continued professional development in this area.
Working with hospice and palliative care professionals, specialist and non-specialist third sector organisations, and people with lived experience, we established a Community of Practice and held a series of workshops with them over 15 months to co-develop the DALLI Toolkit. We also conducted interviews with health and care professionals and people from relevant third sector organisations to help inform Toolkit content. The Toolkit, which complements existing safeguarding policies, aims to increase practitioners’ confidence and understanding offering resources to support health and social care professionals working with people with a LLI identify and respond to DA encountered in practice.
Outcomes
Following piloting and evaluation the Toolkit has been adopted in a small number of hospice and palliative care settings in Wessex, and following discussions with Marie Curie’s Head of Safeguarding, is to be implemented in Marie Curie Hospices nationwide and included on their website as a resource for healthcare professionals. The Toolkit is also being used by domestic abuse services in local authorities and as an educational resource for social workers at a local university.
Next steps
It is now our aim to achieve greater impact and encourage adoption and spread to extend the Toolkit’s reach to other hospice and palliative care organisations and potentially other health and social care services. We have secured Impact Funding from Marie Curie to enable us to work with a professional production company to create a short promotional film about the DALLI Toolkit, and its use in practice, and hold a launch event in the Autumn 2024 to publicise the film and Toolkit and encourage wider adoption. Embedding and integration of the Toolkit will enable health and social care professionals to improve understanding of the complexities of DA in the LLI context and increase confidence to ask about and respond to DA.
Please see below copies of the DALLI toolkit and quick reference guide
Publications:
Domestic Abuse in the Context of Life-Limiting Illness: A Systematic Scoping Review: Michelle Myall ,1,2 Sophia Taylor,1,2 Sally Wheelwright,3 and Susi Lund1
1School of Health Sciences, University of Southampton, Southampton, UK 2NIHR ARC Wessex, University of Southampton, Southampton, UK 3Brighton and Sussex Medical School, University of Sussex, Brighton, UK
Correspondence should be addressed to Michelle Myall; m.myall@soton.ac.uk