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The CARERS Trial

Carers All Require Emotional support, Resilience and Skills

A feasibility trial of a skills-enhancing programme for unpaid carers of people presenting with complex emotional needs and chronic emotion dysregulation.

Research team

  • Professor Martin Webber, Professor of Social Work, 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 Leicester
  • 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 chronic emotion dysregulation, or a diagnosis of Emotionally Unstable Personality Disorder or Borderline Personality Disorder, can experience chaotic relationships, 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 unpaid carers or family members. These carers can often become overwhelmed with the needs and behaviours of the person they care for. Currently, there is a lack of research into the most effective way to support carers in their challenging environments.

An intervention specifically created for carers of people with chronic emotion dysregulation is being considered for use in the NHS, as standard practice. 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.  We want to know whether this course benefits carers or the people they support, so we first undertook an NIHR-funded feasibility trial in March 2024-April 2026.

The Feasibility Trial

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

This research 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 aimed to assess the value of such carers participating in a 12-week support and skills course; and to see if improving carers' wellbeing and skills has an impact on the person they are supporting: the service user. The Feasibility Trial was conducted first, 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)

Early Indicative Results

We are very pleased to announce that the Feasibility Trial has been successful – we have met all of the progression criteria, to proceed to a full trial.

As of early 2026, we are awaiting final quantitative data analysis, and have received positive qualitative data to confirm that the intervention and the trial is both achievable in the NHS and welcomed:

  • Trial recruitment was successful.
  • The course was delivered as planned.
  • Participants completed questionnaires, and
  • They remained involved through follow-up points, including six months later.

These findings show that a full trial can be achievable and that the intervention shows real promise.

Now Looking for New NHS Study Sites

We are now in the process of preparing a protocol for a full RCT and so are inviting expressions of interest from clinicians and Mental Health Trusts to participate in the full trial commencing in January 2027. We are looking for Trusts that already provide carer support and, also those that may not provide any. We have demonstrated that the intervention can be accommodated in both.

Both Adult and Child Services are eligible, since we are widening the inclusion criteria to service users, aged 16+

This is an exciting opportunity to pioneer this approach in the UK and make a real difference to people’s lives.

Carer Voice: This course is a life-saver – it has been transformational, I now have real skills to handle crises situation and actively support my son

Service User Voice: And I feel understood, my family have my back. They now get me and know the support I need. It is such a relief, I feel I have a future.


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

Additional Information for prospective research participants (unpaid carers and service users) in 2027

If eligible, both a service user and their carer(s) can 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: elizabeth.mair@york.ac.uk.

Professor Martin Webber
Duration
Start: March 2024 End: April 2026
NIHR Research for Patient Benefit