Who is Challenging Who(m)? Using research evidence on the perspectives of people with intellectual disabilities and carers

If you ever read these blogs, you might remember some research I talked about a couple of years ago now about "554 voices". This was about results from syntheses (systematically bringing together the findings across several research studies) of qualitative (mostly interview) research about challenging behaviour from the perspective of either people with intellectual disabilities or their carers.

A key question with research on the perspectives of people with intellectual disabilities or their carers is how we actually use the data to change things is some way. There are many ways to think about this, but in this blog I want to focus on a couple of points in relation to our research papers entitled "I'm not a patient, I'm a person" and the review of carer research "He's hard work, but he's worth it" and how we've gone on to use these.

That's NICE?

One way in which we're delighted that our reviews and sytheses have been used is that they were carried out and published just at the right time to influence a number of National Institute for Health and Care Excellence (NICE) guidelines focused on children and adults with intellectual disabilities. The evidence included in the NICE guideline on "challenging behaviour" had chapters devoted to our reviews and syntheses of qualitative research with people with intellectual disability and with carers.

This is all lovely (very NICE, we might say) and hopefully the recommendations in the challenging behaviour guideline, influenced by our research findings, will make a difference to children and adults with intellectual disabilities and their families and carers. The problem is that it is hard to see the potential impact of the research through this route. I'm thinking that this may be necessary, but it won't be sufficient to stop there. I do think as researchers we also need to work to more direct translate research into practice somehow. So, how have we done that?

Empowering carers with PBS resources

Not everyone will be happy with the leap from our synthesis of carer research specifically to Positive Behavioural Support (PBS). However, PBS is a part of the supports and services potentially on offer to carers with a relative whose behaviour has been labelled as challenging. Working as a part of the Positive Behavioural Support Academy and in partnership with the Challenging Behaviour Foundation, we recently produced some practical tools for family carers. A short introduction to these resources and links to the free downloads can be found via a short blog on the Paving the Way website, so I won't repeat that information in detail here. We will try to evaluate the usefulness of these resources for family carers. The important thing for now is that, specifically in relation to PBS, there are some resources to help family carers deal with services and professionals, recognise what is "good" in relation to PBS practice, and hopefully to get high quality support for their relative. These practical issues were all common themes in the research.

Who's Challenging Who(m)?

Having heard a number of individual stories from people with intellectual disabilities whose behaviour had been labelled as challenging, and carried out our systematic research, it was clear that a piece missing from training for social care and other support staff and professionals was explicitly the perspective of people with intellectual disabilities. Working with people with intellectual disabilities, we designed and carried out a pilot test of a half day training course for support staff using the findings from the review research and also some of the personal perspectives of the co-trainers with intellectual disabilities.

Since that pilot, we have changed a number of things abuot the Who's Challenging Who training. The key first point is the way that we describe the training. Originally, we talked about co-trainers with an intellectual disability delivering the training to staff alongside a co-trainer who did not have intellectual disability. Now the people with intellectual disability are the trainers and we have a facilitator working with them to support them and the training session. We have also introduced more of the personal stories of each trainer - integrated within the broader research findings. So, a second key point is that the training is not just about one person's perspective, but it does include that perspective. The training attempts to give a wider perspective about the views of people with intellectual disability drawing on the research evidence. A third issue is that some staff looking at the training wanted included an official perspective on "challenging behaviour" such as definitions used within services and/or recommendations from the NICE guidance (see above). We resisted this and instead we're now very clear that the Who's Challenging Who training is ONLY about the perspective of people with intellectual disability and is nothing about any other perspective. A final change to the training since the pilot research has been the introduction of two short telephone coaching sessions for people going back to their residential settings to change things after the training course.

How are we testing if this makes a difference? For this, we are fortunate to have research funding from the National Institute for Health Research School for Social Care Research to carry out a large scale randomised controlled trial evaluation of the training. In the first phase of this project, we recruited 58 residential settings to take part. If you have services in England especially (potentially also into Wales) and might be interested in the Who's Challenging Who training, we are now recruiting the final 60 services for the second phase - recruiting up to July/August 2016. Check out information about the project and an online expression of interest form. Every participating service gets the training, some within a few weeks and some a few months later.