SHUSH! A Research Network on Suicide, Homicide and Self-Harm in Parent Carers
University of Bath: Katie Maras, Paul Stallard
University of Bristol: Becky Mars, Lucy Biddle, Paul Moran
Cardiff University: Thomas Slater
University of Exeter: Siobhan O’Dwyer, Astrid Janssens (Co-PIs)
Background
More than 800,000 children in the UK are disabled and the vast majority are cared for by their parents. Six decades of research and numerous policy and legislative initiatives have sought to address the negative sequalae of caring, but to little avail. Parent carers continue to experience high rates of physical and mental illness, social isolation, and financial strain. The challenges of caregiving may also lead some parents to harm themselves and contemplate killing themselves and/or the child for whom they care. Research on other family carers – including those caring for parents and partners with dementia, cancer, and HIV – has revealed rates of suicidal ideation four times that of the general population, as well as evidence of homicidal ideation and self-harm. In parent carers, however, these phenomena have been explored in only three studies internationally and none in the UK.
This collaboration addresses Health, Demographic Change, and Wellbeing. Advances in medical technology are allowing children with disabilities to live longer than ever before, but government investment in health and social care is dwindling. As a result, parent carers must do ever more with ever less and anecdotal accounts of suicidal and homicidal carers abound. Understanding these responses to the stress of caring may be the key to better supporting all parent carers and ensuring sustainable, quality care for children with disabilities.
Project summary
We have created a strong collaborative network of researchers, community partners (including carers, health professionals, charities, and schools), and parent carers. The community held workshops, community consultations and carer training over the course of the Initiator Award. These events were used to develop a NIHR RfSC funding application for the first UK study of suicidal ideation, homicidal ideation, and self-harm in parent carers. If funded, this will allow us to continue developing the research network (including strengthening relationships with carers and organisations in the South West and more widely across the UK), conduct a quantitative study comprised of a large-scale survey of parent carers, and conduct a qualitative study comprised of in-depth interviews with parent carers. This will be the first study on this topic in the UK and the first large-scale study internationally.
The community also conducted a rapid review of existing research on suicide, homicide, and self-harm in family carers. This review will set the agenda for all future research on suicide, homicide, and self-harm in family carers. It will be a significant contribution to the international literature and has already provided a powerful foundation for funding applications from the community.
