554 voices – What people with intellectual disabilities and families and carers think about challenging behaviour

Numbers are not everything. However, the world tends to listen more to larger numbers of people. One feature of the Winterbourne View scandal in the UK is clearly that people with intellectual disabilities (ID) whose behaviour challenges services (those with challenging behaviours) were not listened to. Unfortunately, although individuals with challenging behaviour and their carers and families have communicated with elegance and passion about what they need in a post-Winterbourne era, their voices have not yet resulted in suitable action.

Either directly connected to the Winterbourne View scandal, or going on currently anyway, are several related pieces of work in the UK. Thus, there is a NICE review of interventions for challenging behaviour [http://guidance.nice.org.uk/CG/Wave0/654], A Unified Approach [http://www.rcpsych.ac.uk/publications/collegereports/cr/cr144.aspx] is being updated, and several working groups are producing guidance on challenging behaviour services and especially on definitive reviews of Positive Behaviour Support as the guiding intervention model for the UK [http://www.bild.org.uk/our-services/journals/ijpbs/].

Until now, these reports and guidelines have not benefited from systematic research-based analyses of the voices of people with ID and their carers and families. Two new pieces of research will hopefully help to change this situation, or at least contribute to what needs to happen next. My colleague Dr Gemma Griffith and I have carried out two reviews of qualitative research studies focused on how people with ID experience their challenging behaviour and the services provided for them, and families’ and carers’ experiences. The first of these studies was published in the latest issue of the journal Clinical Psychology: Science and Practice [http://onlinelibrary.wiley.com/doi/10.1111/cpsp.12053/abstract], and the second will be published soon in the Journal of Applied Research in Intellectual Disabilities [http://onlinelibrary.wiley.com/doi/10.1111/jar.12073/abstract].

If you do not have access to these pieces of research through a University or other library, you could try asking Gemma (g.m.griffith@bangor.ac.uk) or me (R.Hastings@warwick.ac.uk) for copies…

554 voices

These two new research reports summarise the voices of 554 individuals with ID and challenging behaviour and carers and family members. In combination, these voices are louder and perhaps all the more powerful because of the consistency in the views represented and their direct relevance to the current debates.

In a previous blog [http://profhastings.blogspot.co.uk/2013/04/the-most-significant-and-original-data.html] I explained a little about why it can be useful to combine evidence across a number of research studies about the effectiveness of intervention approaches using a process called systematic review and meta-analysis. A similar process can be applied to qualitative research to draw together findings from smaller studies and to present a new analysis of the messages across research. In this way, the voices of small numbers of people can be amplified and evaluated within the broader context of findings across multiple research studies. This is not a simple summary process – giving an overview of the range of things said – but does involve additional qualitative analysis and interpretation. So, the two new research reports do not replace or negate the value of existing individual pieces of research. Instead, they offer an additional perspective. For those more convinced by numbers though, the new analyses also offer significant additional value (about 50 times the size of typical single qualitative research studies)!

“I’m not a patient, I’m a person”

In our first paper, data from qualitative studies with 163 individuals with ID and challenging behaviour are synthesised. There are some loud and clear messages for everyone currently working in the field of challenging behaviour and producing the large array of official reports. We present a summary picture that describes a vicious circle of challenging behaviour. First, there is considerable imbalance of power in ID services settings (people with ID are not in control of their own lives) and considerable dislike of challenging behaviour service provision. Trigger events for challenging behaviour (often the behaviour of staff members) occur in this context, and lead to challenging behaviours occurring. The response from services and staff is often some kind of restrictive intervention. Such interventions are experienced as aversive, and this feeds perceptions of imbalance of power and dissatisfaction again with services.

Although the typical experiences of services by people with ID and challenging behaviour are negative, our analysis includes positive dimensions. In particular, people with ID talked about their motivation to change challenging behaviour, which they also disliked, and their interest in learning new strategies to help with their challenging behaviours. People with ID also talked about how much better their experience was with staff who had good interpersonal skills, a respectful attitude, and treated them as individuals.

“He’s hard work, but he’s worth it”

In our second paper, we analyse data from 17 studies reporting the experiences of 391 family members and carers. An important starting point for the analysis, but one that is not often explicit in individual research studies, is the Love that parents have for their children. Families and carers do find challenging behaviour difficult, but this love underpins everything – it helps families through the tough times, it drives parents to seek excellent support, and it explains families’ frustration when services do not live up to expectations. Although this underlying Love might seem obvious, it does need to be made explicit.

The remainder of our analysis focuses on some of the more negative experiences faced by families and carers. A loss of a wider self-identity is apparent with lack of opportunities to live a typical life, coupled with family life being much harder work (so not being a relaxing environment). Family members also experience significant emotional and physical strain dealing with challenging behaviour. 

Perceptions of services were also very interesting. Families and carers wanted all services to have appropriate expertise in challenging behaviour, but emphasised the need for wholistic and joined up services not necessarily services that are just about challenging behaviour. Thus, there was the sense of a need for more challenging behaviour “literacy” across health and social care and education. Services were also perceived as creating more stress for families than the challenging behaviour directly, and supports provided were often inadequate for the level of families’ needs (thus creating some of the additional pressure – perhaps making things worse rather than better).

There were also positive views of services. Families appreciated professionals and services who offered tailored, stable and proactive support.

Conclusions

I won’t go on any longer because I’d be in danger of reproducing all the findings from this new research. Instead, I wanted to give you a flavour of the findings. I would also encourage everyone to get hold of these studies, think about the evidence, and use the evidence to inform service design, commissioning and day-to-day practice and training. This research tells us more about what it might be like to be in the shoes of individuals with ID and challenging behaviour and their families and carers. Five hundred and fifty four voices deserve an audience. I hope that this work will convince sceptics (for example: How can we rely on the views of one loud voice during consultation processes?), and also demonstrate again the value of applying high quality research methods to data in the ID field.

As for the UK response to Winterbourne View? No excuses. You have the data, now DO something!!