The CARERS Trial: Carers All Require Emotional support, Resilience and Skills

Research team

• Professor Martin Webber, Professor of Social Work, University of York
• Dr Laura Tucker, Research Associate, University of York
• Karen Bulsara, Research Fellow / Co-Chief Investigator, University of York

Co-Investigators

• Dr Katie Breheny, Research Fellow in Health Economics University of Bristol
• Rosemary Greenwood, Health Sciences, University of York
• Chris Eley, Personality Disorder Specialist Practitioner and Principal Investigator, Avon & Wiltshire Mental Health Partnership NHS Trust
• Dr Chris Sanderson, Clinical Psychologist and Principal Investigator, Rotherham Doncaster and South Humber NHS Foundation Trust
• Lee Joseph, Principal Counselling Psychologist and Principal Investigator, Essex Partnership University NHS Foundation Trust
• Professor Paul Moran, Professor of Psychiatry, University of Bristol

Project Summary

People with complex emotional needs, chronic emotion dysregulation, or a diagnosis of Emotionally Unstable Personality Disorder or Borderline Personality Disorder, can have chaotic relationships, experience highly distressing changes in mood and urges to harm themselves. It is one of the most challenging mental health conditions to live with, for the person, and for their carers or family members. Carers can often become overwhelmed with the needs of the person they care for. Currently, there is a lack of research into the most effective way to support carers in these challenging environments.

A course has been designed as an intervention specifically for carers of people with chronic emotion dysregulation. It was originally developed in the US and adapted for the UK, and consists of 12, 2-hour, weekly, peer-supported group sessions, delivered online. The course aims to inform carers about chronic emotion dysregulation; stress the importance of maintaining personal wellbeing; and equip carers with skills to support loved-ones in crisis. However, we don't know whether this course benefits carers or the people they support, so we plan to undertake a feasibility trial.

The trial will offer the course to one group of carers and, as a comparison, another group will be offered the support currently available. We will ask carers and their loved-ones if there is any improvement in their lives at the end of the intervention and after a 9-month follow-up period. We will interview carers, people with chronic emotion dysregulation and healthcare staff, to assess their views on the acceptability of the trial and the intervention.

This study was initially devised by a mental health carer with lived experience of supporting a loved one, who was an NHS service user, with chronic emotional difficulties: including multiple suicide attempts and self-harm. The study aims to evaluate the value of such carers participating in a 12-week support and skills course. The study also aims to evaluate if improving carers' wellbeing and skills has an impact on the person they are supporting: the service user. The study is a Feasibility Trial, to determine whether a full-trial is possible, since recruitment of both carers and service-users to a research trial, for such an intervention, has not been done before in the UK.

The study is run from the University of York. There are three study sites: Bristol, Essex and South Yorkshire/South Humberside (UK)

For more information, contact the research team: carers-trial-project@york.ac.uk.

For prospective participants

If eligible, both a service user and their carer(s) will be recruited onto the trial together.

The carer(s) will be selected to take the online course: either during the year of the trial, or, later, at the end of the trial; and they will be asked to complete questionnaires at 3 different time points over the year. The service user will just be asked to complete questionnaires at the 3 different time points during the trial. There is no additional intervention for the service user. Some carers and service users will also have the option of giving their thoughts about the intervention and trial, in an online interview.

The online course runs for 12 weeks. The questionnaires take about 40 minutes to complete online, at each time point.

The carers course was designed by clinicians and carers, and focuses on practical information to understand what is often an overwhelming situation for all concerned; how to change the way that difficult emotions are communicated; and to manage crisis situations more effectively. The aim is for carers to gain a better understanding of their loved ones' experience and behaviours and to develop skills to improve their own wellbeing and relationships, in a supportive peer environment.

Both carers and service users who take part in the trial will receive a £20 voucher for each set of questionnaires completed, totalling £60 for all 3 sets of questionnaires, as our way to thank you for your time and participation in this important study.

For more information, contact the Research Trial Manager: laura.tucker@york.ac.uk.