SHUSH! A RESEARCH NETWORK ON SUICIDE, HOMICIDE, AND SELF-HARM IN PARENT CARERS

INITIATOR FUND 

Project period: March – July 2019 

GW4 community leads 
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) 

University of Warwick: Professor Richard Hastings 

Project overview 

SHuSH! is a network of researchers, carers, clinicians, and community organisations working together to develop and conduct world-leading research on suicide, homicide, and self-harm in parents caring for children with disabilities. The acronym SHuSH! reflects the silence that has, to-date, surrounded these issues in research, practice, and policy. Carers who are experiencing thoughts of suicide or homicide, are self-harming, or are otherwise in need of urgent support should contact The Samaritans on 116 123. 

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 carersThe 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. 

Community site (GW4 Portal)