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FUNDING AWARDED FOR GROUND-BREAKING STUDY

Anna Sansom • October 19, 2021

We are excited to announce that our research team has been awarded funding from the National Institute for Health Research (NIHR) Research for Social Care (RfSC) scheme. 

This is the first RfSC grant awarded to the University of Exeter and reflects the university’s growing commitment to research on social care. 


The development of the research was supported by a grant from the GW4 Alliance, a collaboration between the universities of Exeter, Bristol, Bath and Cardiff designed to support innovative research on global challenges. 


The current research team includes researchers from the universities of Exeter, Bristol, Cardiff, and Southern Denmark, as well as four carer co-investigators who also contributed to the GW4 developmental work.


The NIHR funding will enable the research team to explore a range of factors that contribute to parent carer wellbeing, and will provide a powerful foundation for the development of better strategies for supporting carers in crisis. The funding will also allow the team to identify the factors that contribute to or protect against experiences of self-harm and suicidal thoughts, examine the everyday experiences of parent carers who have thought about suicide or self-harmed, and seek carers’ suggestions for research, practice, and policy.


Dr O’Dwyer, the study’s lead, said: “Caring for a child with a disability or long-term illness can be extremely rewarding, but it also takes a significant toll. Suicide, homicide, and self-harm have been largely ignored in the research on family care and, as a result, these thoughts and experiences are often misunderstood or overlooked by health and social care professionals. Understanding parent carers’ experiences is the first step towards better support for carers and those they care for.” 


Lisa Reakes, a parent carer for her 15-year-old daughter with an acquired brain injury, is a co-investigator on the research. She said: “I’ve been involved since the beginning, helping to shape the research and make sure it’s really addressing the needs and experiences of carers. The everyday life of a parent carer can be very challenging on multiple levels, a contributing factor to why so many carers have thought about suicide or self-harmed in one way or another. There are very few places where we can talk safely about these experiences. I hope this research will change that.” 


By A.Sansom2 July 22, 2024
The first findings from the Parent Carer Wellbeing Study were published this month. Using data from the survey, we found that more than 40% of parent carers had thought about suicide, with some already having attempted suicide. Although many parent carers had thought about suicide, less than half had ever told anyone they were feeling this way or sought help. One of the main risk factors for suicidal thoughts was feeling trapped in the caring role. The findings show that parent carers think about suicide at much higher rates than the general population and at higher rates that other unpaid carers. They have serious implications for policy and practice, and we are now working closely with policy makers, local authorities, and health & social care professionals to help them understand the challenges parent carers face and develop strategies to mitigate them. The full report is available here . A news article about the finding - including the stories of parent carers who were co-researchers on the study - is available here . In the video below you can hear Associate Professor Siobhan O'Dwyer (who led the study) and two parent carers (who were co-researchers) share their thoughts on the findings. If you're a parent carer in need of urgent support, please contact the Samaritans on 116 123 or text SHOUT to 85258. We are currently preparing a report on the findings from the interviews and hope to share that soon.
By Anna Sansom April 3, 2022
A big 'thank you' to everyone who completed the Parent Carer Wellbeing Study Survey!
By Anna Sansom October 19, 2021
Have you completed our national survey of parent carers?
By Anna Sansom October 19, 2021
The Health Research Authority (HRA) is committed to enabling and supporting ethical research in the NHS. It protects the rights, safety, dignity and wellbeing of research participants.
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