Julie Billsborough and Sheena Foster
This week a paper from a large piece of research we were involved in was published. So much has changed since we finished the project in 2019, including the loss of a dear colleague and the Covid-19 pandemic.
Despite this, the research feels very relevant as it is about the implementation of an online support package for mental health carers. With so much of the world online right now and health support rapidly being moved to telephone and digital platforms, what we found could be useful.
-Read the paper published in BMC Health Services Research–
Our study, known as IMPART, looked at the roll-out of a digital health intervention for carers in mental health services, including factors that affect staff uptake and use. It was the first implementation study of a digital health intervention in routine mental healthcare.
The platform, called REACT, was tested in a previous study, having been initially developed all the way back in 2010. These things are not quick to do!
REACT stands for Relatives’ Education and Coping Toolkit. It is an online toolkit to help carers care for someone being supported by Early Intervention in Psychosis services.
Originally it was a hard-copy workbook, styled as a self-management guide. The idea was carers would work through the toolkit supported by a member of staff, discussing questions and talking through topics such as understanding psychosis, communication in the home and information sharing with staff.
It was well received by carers but to future-proof the resource and make it more widely accessible, the team decided to create a digital version.
We knew digital interventions were being used to support relatives of those with physical and/or mental health conditions.
However, we didn’t really understand how they could be successfully implemented into routine clinical practice. This is where our project came in, and our work within it as peer researchers.
Carer expertise
As carer peer researchers, we were employed to input into key aspects of the study, drawing on our expertise. We were enthusiastic about our role; we felt our experience could benefit the research team, the stakeholder groups and the data analysis.
We helped train the researchers who carried out the interviews with carers – we understood how the phrasing of an interview question could make a person feel valued. There were practical benefits too – we decided which parts of the REACT website to turn into downloadable PDFs and helped the team to word emails appropriately when inviting carers to take part in the study. We delivered workshops and helped write up the final report.
Our expertise was useful and valued, even though we did experience some frustration with the research process. For example, it would have been good to have interviewed some of the carers ourselves to get a deeper understanding of some aspects of the research data but delays getting our research passports meant this wasn’t possible.
We also found that some research staff were taken aback at the idea of a carer peer researcher. Research teams don’t always have all the background knowledge they need, but they may not know what they don’t know.
We think it would be useful if research teams shared how having carers on the team can be useful to combat potential misunderstandings.
The focus of our study was the implementation of the toolkit. Would staff promote it to carers? Would carers use it? Can the NHS easily support the roll-out of a digital intervention?
You may be unsurprised to read that there were many barriers to implementing REACT within mental health services! These included high staff caseloads and difficulties prioritising relatives.
We could see how busy and frazzled Trust staff were and having something else to do, such as encouraging carers to sign-up to a digital intervention, just wasn’t their top priority.
When we conducted the IMPART study in 2016/2017, most carer support happened face-to-face, as was most work with people in early intervention services. Overall, digital interventions were of interest but not warmly embraced.
Despite this, we found staff and carers were very positive about REACT itself, with staff viewing the toolkit as a useful addition to face-to-face support.
However, it was really hard to get REACT into the hands of carers and only 159 carers accessed it over 18 months across the six sites in our study (which were all NHS Early Intervention in Psychosis teams). This was a small number compared with how many people could have taken it up.
Implementation gap
The support was an evidence-based intervention, consistent with NICE guidelines for schizophrenia and support for carers. In the research literature there is talk of an ‘implementation gap’ – with lots of research never making it into practice.
With this project, we saw this being played out and systems struggling to adapt. So what could have been done differently?
One thing that might have helped was if carers were asked to help spread the word about REACT in the Trust.
We feel having a Carer REACT Champion could have made all the difference in getting the word out about the toolkit and what a difference it had made to their lives and to the person they were caring for. But too often, we carers are not viewed as an asset or resource by the NHS. We are often overlooked.
What was also interesting to us was Trust staff views about giving out information. Some staff were reluctant to give out too much information early on for fear of frightening carers. But carers wanted information.
We do wonder how much of this is to do with control – perhaps some mental health professionals feel unwilling to give up some of their control?
Other barriers to implementation came out of this study. Staff were frustrated by technical issues and there was significant resistance to a standalone online package, and some staff were worried about managing risk on the online forum. We concluded that significant changes are needed in NHS mental health services to make use of online toolkits.
Will the post-Covid-19 context be a driving force for change? It does feel like on an individual level, people’s appetite and confidence in using online platforms for work are shifting. This must translate upwards to the organisational level.
Might there be hope for REACT yet? We hope so.
Julie Billsborough and Sheena Foster both worked on the IMPART study as peer researchers, through the McPin Foundation.
Read the paper here and find out more about REACT here. The toolkit modules are freely available to carers and NHS staff.
