In 2022, Family Carers Ireland worked in partnership with Dr Sarah Donnelly, UCD School of Social Policy, Social Work and Social Justice, to do a piece of research looking at family carers who experience harm in their caring relationship. The small research project “Understanding Carer Harm” was funded by the Irish Research Council’s New Foundations Grants Scheme. The project involved secondary data analysis of survey responses and interviews with nine family carers (five carers of autistic people and four carers of people with dementia) who have experienced carer harm as well as interviews and focus groups with a range of professionals.
Key findings include:
- Family carers spoke about experiencing a wide range of types of harm including shouting, screaming, damage and destruction of personal possessions or the family home and significant levels of physical violence as well as knock-on emotional and psychological distress. This impacted on their own and other family members’ health and wellbeing.
- Participants reported the challenges of navigating a fragmented and complicated health and social care system. They recounted the experience of constantly having to ‘fight’ and ‘beg for help’ in order to stay safe. Professionals reflected on their immense feelings of helplessness and frustration about their inability to respond, highlighting the link between carer harm and the absence of appropriate condition-responsive services.
The research findings informed the development of four information leaflets, which were co-designed using a World Café methodology. The findings from the World Café sessions highlighted the complexity yet also the importance of naming carer harm, the need to raise awareness of carer harm amongst professionals and family carers as well as potential supports that would be helpful for carers that are experiencing carer harm.
If you have any questions in relation to the report or leaflets, please contact Dr Nikki Dunne, Research Manager, Family Carers Ireland email@example.com or Dr Sarah Donnelly, UCD School of Social Policy, Social Work and Social Justice firstname.lastname@example.org