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.
