After the BBC Panorama documentary programme conducted secret filming of the abuse of people with intellectual disabilities at Winterbourne View [see http://www.bbc.co.uk/news/uk-13548222], the nation was rightly shocked. Most people who work in the field were shocked too, but probably not totally surprised. This may be an indication of the fact that we know that abusive practices can easily happen, especially towards those people with intellectual disability whose behaviour challenges. In some sense, we know deep down that there is something about “challenging behaviour” that makes awful things possible.
It does feel like the government responses to the Winterbourne View scandal throughout the UK (e.g., there is a separate response to Winterbourne in Wales to the main Department of Health – DoH - response) have been rather slow to get going. There have certainly been some improvements since the draft DoH response document was published. For example, it is a no-brainer that more locally-based and person-centred service provision for individuals in the community is a good thing. Of course, this is good for quality of life and for people maintaining their family and social networks (rather difficult to do when you are placed “out of area” several hundred miles away). What makes us think that it is ok to “send people away” in this day and age, I just don’t know. Anyway, local provision should also be safer. Family and friends will be more involved with the life of the person and will be more likely to notice any signs of problems. Most responses to the scandal also suggest that increasing support staff/care staff skills in interventions within the Positive Behaviour Support family of techniques is also needed. Thus, there is a call for staff training. This will also probably be a good thing.
The point of this blog, however, is to explain a little about why I think theory and evidence tells us that this will NOT be enough. There are some serious omissions in the policy responses and also, I would suggest, limitations in the nature of Positive Behaviour Support interventions. So, whilst I fully support the positive changes being suggested we do need to deal with some of the missing pieces.
This blog is based on the presentation I gave today at the BILD International Conference on Positive Behaviour Support – many thanks to the conference delegates for their interest and positive reaction, and also to BILD for the invite! See http://www.bild.org.uk/our-services/events/the-bild-pbs-conference/
A functional understanding of carer behaviour
For 20 years now since the publication of my paper with Professor Bob Remington on “Rules of Engagement” [http://www.sciencedirect.com/science/article/pii/0891422294900086], I have worked with colleagues to try to describe the influences on those who work or live with “challenging behaviour”. Most importantly, it is clear that the variables that affect challenging behaviours are almost always other people’s behaviours. Thus, the best way to think about challenging behaviour is from a behavioural systems perspective.
In particular, our research over almost 20 years confirms that being exposed to challenging behaviour is distressing and aversive for carers. Thus, they will tend to behave in ways that reduces this negative experience for them. Unfortunately, these are then just the responses that will maintain challenging behaviour over long periods of time. We know that challenging behaviour persists very strongly over decades. In addition, carers seem likely to experience negative thoughts in relation to challenging behaviour. If someone is aggressive towards you, you are very likely to feel angry and it is a natural reaction to think that something must be done about that challenging behaviour. It isn’t fair, or the person shouldn’t be allowed to get away with it.
The problem here is perhaps that, especially in relation to the thoughts and statements of carers, we make assumptions that carers’ thinking is wrong and something to be fixed. We either try to select support staff who don’t overtly talk in this way, or we try to train it out of them. In fact, we might make these sorts of thoughts and feelings a taboo subject. This is likely to be a dangerous strategy, and may lead to some informal (perhaps hidden from view) working cultures and practices that are toxic both for support staff and also for those whose behaviour challenges.
A different perspective
Latterly, my work with colleagues on this problem has formulated the issue in a different way. Specifically, we’ve been making a different assumption – one that suggests that difficult emotions and thoughts are perfectly “normal” or to be expected. It is natural to find it tough to adjust to disturbing challenging behaviours, and our minds work in ways that will mean that we will often feel under threat when faced with challenging behaviour. This normalising of people’s experience is significant, but has some implications for what we do within services for people with challenging behaviours and what we need to include in the policy and other responses to Winterbourne View.
First, it is important to work directly on carers’ emotional life. This is not simply about work being stressful and having some work stress interventions around. Nor is it probably simply a matter of debriefing about the emotional impact of serious incidents on carers (too late once it has happened). Carers need to be better prepared so that they know that rather unpleasant emotions and associated thoughts about people that they probably would rather not have are normal and natural reactions. The significant point is then making sure that carers have skills that enable them to NOT respond to negative emotions and thoughts when they arise. Mindfulness and acceptance based approaches are more about noticing these things, but not engaging with them nor actively trying to get away from them. There are data emerging that mindfulness-based interventions may be beneficial for carers of people with challenging behaviours, although direct tests of the hypothesis that I have just posed have not been published (as far as I am aware).
Basically, the bad stuff has to be out in the open. Carers need to be able to talk about it and know that they are not going to be blamed for having these perfectly human thoughts and feelings. Of course, if you bring these things out into the open you also need supportive environments within which this happens. A culture of mindfulness and acceptance may be a way to do that.
Perhaps less “natural” but also maybe equally understandable are some more pervasive carer attitudes towards people whose behaviour challenges. Although we might try to train staff to think in line with Positive Behaviour Support models, and thus to have a more functional understanding of behaviour this is perhaps just too theoretical. In addition, most staff on the ground may be lucky to get perhaps a couple of hours’ training in their induction about understanding challenging behaviour. How can this be enough? More importantly, where is the analysis of what needs to be trained and what specific outcomes we are trying to achieve? We are also very clear that staff either must already hold “the right values” or tell them (in training, in our policies within services) what values they must espouse (at least when the important people are listening – but who knows at other times!). My position is that carer values/attitudes are too important to leave to chance. We must directly change carers’ attitudes.
This direct approach to attitude change, accompanied by a simple but clearly articulated theory about what needs to be changed and how to do it, is what underlies the Who’s Challenging Who training that I described in a previous blog [http://profhastings.blogspot.co.uk/2012/06/whos-challenging-who-changing-hearts.html]. Although the ideas behind this training are I think solid, our outcome data are only preliminary so more research is needed (researchers have to say that regularly in case someone thinks our usefulness has passed…).
What needs to be added to the responses to Winterbourne View?
The Elephant in the room is that some of the stuff we really don’t like to see happening among carers, and to carers, is just normal human stuff. This needs to be acknowledged openly. “They” say that everyone in certain circumstances could murder another human being. Perhaps the same is true here – maybe many of us could have colluded with that staff team in Winterbourne View under a certain combination of events/circumstances. If I’m really honest, I’ve hated some folks for a while with “challenging behaviours” – I have felt angry at being attacked, and then bad afterwards for feeling angry. Have you felt the same, or have you never been in that direct support role day-after-day with people whose behaviour seriously challenges?
So, let’s be honest and open about these difficult things and include in what we do going forward three things:
1. Support and training for staff that helps give them coping skills that will make them more resilient, and help them not to get caught up in negative feelings and thoughts when they do pop up.
2. Training to directly increase carers’ empathy for people whose behaviour challenges – putting themselves in the shoes of those that they support or live with. And this is not a one-off: we need to be reminded every now and then. In my PhD thesis, that was about a functional approach to care staff behaviour, I included in the front a quote from Harper Lee’s To Kill and Mockingbird. It was the one about not really knowing a person until you walk around in their skin. That initial analysis was rather rough around the edges but I think with attitude change training like Who’s Challenging Who, we might be finally getting closer.
3. Designing the open cultures within services for people with challenging behaviour that supports the constant battle for carers’ hearts and minds.