Family Connections is an online skills and education group programme that seeks to support unpaid carers of people with chronic emotion dysregulation who face burnout. How effective is the programme in enhancing mental wellbeing, reducing carer burdens, and improving family relationships?
Some people experience chronic emotion dysregulation. This means that they often experience emotional instability, impulsivity, self-harm, suicidality and find it difficult to interact with other people. Sometimes they are diagnosed by a psychiatrist as having a Borderline Personality Disorder or Emotionally Unstable Personality Disorder, both of which carry stigma.
Families and friends caring for these people can experience depression and burnout. Being an unpaid carer can also have other impacts such as having to give up work, work fewer hours, or even move house. However, there is limited support available for carers.
Family Connections (FC) is a group programme provided to carers to provide education, skills and support. It was developed in the United States and adapted for the UK. International studies have found that it supports carers in coping with stress and improving relationships. However, there is no evidence that it can work in the UK.
Feasibility trial
A multidisciplinary team was brought together for a feasibility trial, co-led by a carer with lived experience, Karen Bulsara, and Professor Martin Webber, who is Director of Mental Health Social Care Research Centre in SBS. The team has just completed a feasibility trial of FC in the NHS in England as the first step in developing its evidence base in the UK. This study aimed to test whether, and how, a full trial could be possible. This included testing the:
recruitment and retention of dyads of carers and service users (people who experience chronic emotion dysregulation who are receiving care from NHS mental health services) in a randomised controlled trial (RCT);
the acceptability of both the trial and the FC programme;
the collection of outcome measures; and
the best measures to use to capture key outcomes and data relating to costs.
The benefits of FC to both carers and service users has not been tested before, so we were particularly keen to see if this would work.
The study involved undertaking a feasibility RCT which both Bulsara and Webber led. We worked with three Mental Health NHS Trusts to recruit dyads of unpaid carers of people with chronic emotion dysregulation and the person they provided care for. The carers were randomised to receiving either FC (the ‘intervention group’) or support as usual, which is often very limited (the ‘control group’).
Carers in the intervention group received FC, which consisted of 12 weekly, 2-hour online sessions, including peer support; current information on emotion dysregulation; treatment pathways in the NHS; and skills for managing crises and communicating effectively. This was co-delivered by a mental health professional and a carer, both trained in FC. Service users in both groups received their usual care and no additional interventions were provided to them as part of the trial.
Outcomes collected from both carers and service users were: mental wellbeing; capability wellbeing; health-related quality of life and service use. The outcomes aimed to show whether there was a benefit to the carer receiving the intervention and whether there was also an indirect, secondary effect on their respective loved-one, from the carer receiving this support. Indications included a better understanding of the condition, a reduced burden of care and depression, and improved communication in relationships. Health economic indicators were used to show a potential reduced burden on other support services, e.g. visits to GP, A&E, or emergency services, following self-harm and suicidal behaviours. Data were collected prior to randomisation (baseline), at the end of the FC programme (14 weeks post randomisation) and follow-up (40 weeks post randomisation).
We used qualitative semi-structured interviews with carers, service users and staff involved in the trial to explore the trial processes and experiences. An embedded economic evaluation tested the feasibility of collecting economic and service use data in a full trial.
Findings
Prior to the study we specified three criteria for progression to a definitive trial:
To test recruitment in a definitive trial, we aimed to recruit at least 75% of the participants within six months. This criteria was met.
To test data collection procedures and retention of participants in a trial, we aimed to obtain full data from at least 75% of the participants at the end of the intervention. In our study, 92% of carers and 88% of service users provided data at this point. The retention of participants was similarly high at the final follow-up point with data obtained from 87% of carers and 77% of service users.
To test the acceptability of FC, we aimed for at least 75% of the carers in the intervention group to attend at least 9 of the 12 sessions. We achieved close to this (68%) and found that if the sites had supported those who missed sessions to remain in the groups, the retention in the intervention would have been higher.
In the qualitative interviews, the participants reported that they found the trial processes to be acceptable to them. They found that the number and duration of questionnaires was acceptable and the reminders to complete them was not intrusive. Being randomised to either the intervention or control group was not raised as a concern by participants.
Both carers and service users reported positive experiences of the FC group intervention. They found the groups supportive and the online delivery fitted in with their busy lives, though some would have preferred in-person delivery if it were available.
Carers described gaining a range of skills and a different level of understanding from the course. Some felt more confident in managing some situations surrounding the care of their loved one, utilising skills learnt on the course. Service users described a greater sense of openness in their relationships with their carer, and felt that through participating in the course, their carer had gained a better understanding of their experiences.
These findings were supported by the outcome measures which showed improvements in carers’ burden, mental wellbeing, family relationships and health-related quality of life for those in the intervention group. A similar pattern emerged for their loved ones with improvements in mental wellbeing, social adjustment and health-related quality of life.
A larger trial is needed to fully measure the impact of FC on outcomes for carers and their loved-ones. Pursuing this is our next objective.
Papers reporting the findings of the study are currently being prepared, so please keep an eye on our project webpage which we will update when these are published.
