I’ve got out of the habit of writing
blogs for sharing with the world (who’s interested anyway in what I have to say
about anything?!), or perhaps wasn’t sure I had something to say for a while.
Several recent discussions with colleagues though have prompted me to write
this piece about legitimate questions and comments about Positive Behavioural
Support (PBS), and my personal thoughts on answers to these questions and
points. The questions raised/points bring together the different ways I have
heard several individuals talk about these issues rather than one person’s
words. If you read this and think “that’s me”, then any similarity to what one
individual may have said in my hearing is purely coincidental.
What
is this thing called PBS – no-one really knows what it is?
Before the end of 2013, it is possible
in the UK intellectual disability community that we could have argued that
there was no agreed perspective on the definition/conceptualisation of PBS.
There were many sources internationally where definitions and concepts were
available and these were clear, but many of these resources are inaccessible by
being hidden away in published journals.
At the end of 2013, a co-operative group
of challenging behaviour/PBS practitioners and academics wrote articles for a
special issue of the BILD-published International Journal of Positive
Behavioural Support [http://www.bild.org.uk/our-services/journals/ijpbs/].
These articles included theory and research evidence about why challenging
behaviours may occur in people with intellectual disability, a detailed
definition of PBS, a discussion of the systems/organisational supports needed
around PBS to ensure effective implementation, and a discussion of how (based
on the newly formulated definition) the competencies required of individuals in
delivering high quality PBS might be further defined.
The combination of the theory paper
(Hastings and colleagues, 2013) and the definition paper (Gore and colleagues,
2013) provides a crystal clear perspective on what PBS is. It is very clearly a
framework for both understanding challenging behaviour,
developing interventions based on a personalised understanding of an individual
and their challenging behaviour, and improving the quality of life of people
whose behaviour challenges and those around them. PBS is not a treatment or one
single intervention. Instead, a range of evidence-based practices and focused
interventions will be brought together within a PBS framework to design an
individualised plan (based on a formulation/conceptualisation of the core
difficulties faced) to both increase quality of life and reduce the negative
impact of challenging behaviour.
The Gore and colleagues (2013)
definition is also closely aligned to international definitions of PBS, but
with certain nuances to ensure it is focused on the UK context and specifically
relevant to professionals and services working with people with intellectual
disabilities. However, these papers also require payment or access to the IJPBS
journal online or in print version.
Since then, the core definition of PBS
has been used to inform a whole range of PBS resources and published online,
completely free, and under a Creative Commons license that means anyone can use
and adapt them without risk of breaching copyright. A variety of stakeholders
have worked with the PBS Academy to develop these resources. First, we produced
a Competencies Framework covering what people need to know and demonstrate that
they do to show that they are delivering PBS as intended. Second, we asked
different stakeholders to tell us what they needed from PBS resources to help
them in their lives or in their work. The groups we worked with were: parents
and family carers, people with intellectual disability, direct care staff,
service providers and service managers, clinical professionals, and
commissioners and care managers.
There is no equivalent in the UK of
expert-developed definitions of PBS, and then co-produced practical materials.
These resources have been developed for the benefit of everyone and are all
available via the PBS Academy website:
The PBS Academy website also includes a
link to the BILD-produced video for people with intellectual disability
explaining to them what PBS is all about. Again, this video is informed
directly by the definition formulated by Gore and colleagues (2013).
My apologies for a long answer on this
first point, but I think you can see that it is absolutely clear within the UK
what PBS is. There are also resources for everyone that explain this, and these
are freely available to anyone with an internet connection. As far as I can
see, there is no alternative conceptualisation out there in the UK with this
pedigree, comprehensiveness, and degree of co-production of practical materials
and guidance. Therefore, there is no confusion. Individuals may dislike aspects
of the definition or wish that certain components were not included, but this
does not take away from the fact that the definition is clear. We do know what
PBS is.
Why
does PBS have to emphasise “behaviour” or “behavioural”?
The PBS Academy suggests the use of the
word Behavioural when talking about PBS – that is what the B stands for. The reason
for this is that the use of a behavioural theoretical understanding and
associated behavioural assessment and intervention methods are one of the core
parts of the definition and conceptualisation of PBS. In fact, this is one of
the 10 core features of the definition of PBS from Gore and colleagues (2013).
This thinking assumes that for many people with intellectual disability (not
all), their challenging behaviour is caused by aspects of their environment
(both social and physical). Thus, a theoretical perspective and methodology is
needed to develop an understanding of these environmental features and to
design appropriate interventions using evidence-based practices.
An alternative perspective is that it
really does not matter what “PBS” is called – the most important thing is the
clarification of the underlying theory and definition as defined
comprehensively by Hastings and colleagues and Gore and colleagues. Although
there is value in a precise label, and Positive Behavioural Support is
preferred, we don’t need to fall out about a name. I do realise that
“behavioural” and “behaviour” sound aversive to some people and have
connotations that are unhelpful. To be clear, PBS is not only about behavioural
methods (see below) and it certainly does not see only the “behaviour” and not
the person. Please read the detail of what PBS is and how it is used in all of
the PBS Academy resources on or webpage. Then you will see that these
perceptions are not reality.
PBS
is just about Psychology or Psychologists
It is true that Psychologists, in theory
at least, ought to be the profession most likely to already have many of the
competencies defined clearly in the PBS Academy’s PBS Competencies Framework.
In addition, before looking at the detail of the Competencies, many
psychologists think they are experts in PBS. However, a part of the rationale
for developing the competencies and describing functional “levels” of
competencies within the Competencies Framework was to be clear that PBS is
absolutely not about one profession or another. People I know with demonstrated
competencies in PBS include Speech and Language Therapists, Occupational
Therapists, Social Workers, Nurses, and Yes some psychologists.
It is also clear from our theoretical
description (Hastings and colleagues, 2013) that evidence-based interventions
addressing a number of dimensions or aspects of the lives of people with
intellectual disability are a part of the PBS framework. Gore and colleagues
also clarified that one of the 10 defining features of PBS is the use of
non-behavioural evidence-based interventions. Interventions targeting, for
example, physical health, mental health, relationships between people, social
skills, communication skills, and occupational skills will all be a part of PBS
interventions. The point is that a multi-disciplinary understanding of
challenging behaviour and multi-component intervention are needed if you want
to deliver successful interventions for people with intellectual disability and
challenging behaviour. What is needed is a shared theoretical framework to
guide this multi-disciplinary effort. Everyone working in, and protecting,
their silos and their own profession is not helping and not consistent with the
evidence for why challenging behaviours occur.
So, if you think PBS is all about
Psychology only then think again.
There
is no evidence for PBS and it didn’t work for me/doesn’t work for everyone
As we have seen, PBS is a framework and
not a specific intervention. However, it is made up of evidence-based practices
and a range of evidence-based interventions targeting key causal variables and
important outcomes for individuals’ quality of life. PBS itself is
evidence-based in the sense that it draws on underlying theory and evidence
about why challenging behaviours occur. Like other service models or
comprehensive “packages” addressing multiple outcomes, it is hard to evaluate
the over-arching thing called PBS. However, it is not impossible. For example,
we can evaluate if people have better outcomes when referred to a specialist
service that runs on the basis of a PBS model. Professor Angela Hassiotis from
UCL has done this within the gold standard Randomised Controlled Trial (RCT)
design.
We could also train people in PBS skills
and develop their competencies, and see if this makes a difference to the
outcomes for people with challenging behaviour (see RCT underway also by the
Hassiotis team).
Following the second approach, we could
develop the skills of unpaid carers including parents of children with
challenging behaviour and see if this training leads to reduced challenging
behaviour and improved quality of life for the child and family as has been done
by Professor Durand and colleagues in a RCT in the USA.
The RCT studies mentioned above that
have released results so far do show that “PBS” as a whole is effective – at
least following the designs and research questions that these designs can
answer. However, a challenge with all of these evaluation approaches is having
evidence that PBS was being implemented with fidelity otherwise we cannot say
whether PBS is effective itself. This was one reason for us developing the PBS
Competencies Framework and the additional PBS Academy resources. These could be
used to develop tools enabling the checking of PBS delivery to make sure it is
consistent with the overall framework as we defined.
Thus, there are several ways that we can
challenge the suggestion that PBS is not evidence-based. However, it is
appropriate to ask this question and to keep asking it. We do need to develop
clearer evidence. However, in terms of service delivery in the UK right now
what alternatives for comprehensive models or frameworks are there? Anyone?
Comments such as the fact that an
individual with intellectual disability or a family carer has “had” PBS and did
not think that it worked, play a central role again in the definition and scope
of PBS. Another of Gore and colleagues’ 10 defining features is the core role
of stakeholder direct involvement and feedback on the methods and outcomes of
PBS. Thus, if a person or their carer is not positive about the outcomes their
supporting team should have taken this very seriously indeed. A further one of
the Gore 10 is also the use of ongoing data collection to inform PBS
intervention decisions. Thus, if it was clear from either the person
themselves, a carer, or other data sources that outcomes (increased quality of
life and/or reduced challenging behaviour) were not improving, this should lead
to some reassessment and re-designing of the intervention until it was
successful. A feature of PBS ought to be that we don’t give up on a person.
Interventions that are not working should be replaced with others and their
outcomes also monitored.
That said, no approach is going to have
a 100% success rate. Examples of failure do not invalidate the approach unless
the examples of failure outweigh the individual examples of success. In
addition, it is tempting to ask individuals who feel that PBS has not worked
for them whether PBS was actually implemented with fidelity. With the PBS
Academy resources, it will hopefully be easier in future to answer that
question.
Finally, I would agree that no one intervention
will work for everyone with challenging behaviour. That is one of the reasons
why PBS is a framework incorporating a variety of evidence-based practices and
interventions. This means that PBS is individualised for each person. Of
course, there will still be failures but at least PBS actively attempts to
personalise supports and should be flexible to change the interventions being
used when it is clear they are not working.
PBS
is not the only intervention for supporting people with challenging behaviour
As we have seen above, PBS is a
framework incorporating a range of evidence based practices and interventions
addressing a variety of risk factors and outcomes. Thus, it is not an
intervention to be compared with (for example) Cognitive Behaviour Therapy. PBS
is broader and could incorporate a CBT intervention if one of the factors
determining a person’s challenging behaviour was an underlying mental health
problem. I suggested above that there may be no other comprehensive framework
for intervention for challenging behaviour in the field of intellectual
disability that is built upon a clear model/understanding of the multiplicity
of reasons why challenging behaviours occur. If there is something that
compares in this way, then please do let me know.
Challenging
behaviour is being seen as a diagnosis for which PBS is the treatment
This one really does annoy me I have to
say, and it is tempting simply to dismiss it but I won’t. No PBS practitioner should
in any sense consider challenging behaviour as a diagnosis, and in fact no-one
should. It is clear that the definition of challenging behaviour emphasises the
challenge posed by the environment and that challenging behaviour is
socially-defined in terms of its impact on the person or others. Thus, you
cannot simply look at a presenting behaviour and say “Yes, this is
challenging”. You have to instead consider what impact the behaviour is having.
Challenging behaviour as a diagnosis is not a part of PBS.
I have already dealt with the point
about PBS not being a single treatment or intervention. Thus, neither part of
this statement is true and certainly is not what PBS is about.
That said, there may well be thinking in
some quarters that reflects this statement. Some people may well consider
challenging behaviour as a diagnosis and “PBS” as the treatment of choice.
However, this problem is not uniquely a challenge for PBS but is a broader
misconception emanating from the view of challenging behaviour as a diagnosis.
The whole field needs to challenge such an assumption, and I am pleased to see
that this diagnostic perspective is not found in recent UK policy documents.
Articles mentioned:
Gore, N. J., McGill, P.,
Toogood, S., Allen, D., Hughes, J. C., Baker, P., Hastings, R. P., Noone, S.
J., & Denne, L. (2013). Definition and scope of Positive Behavioural
Support. International Journal of Positive Behavioural Support, 3
(2), 14-23.
Hastings, R. P., Allen, D.,
Baker, P., Gore, N. J., Hughes, J. C., McGill, P., Noone, S. J., & Toogood,
S. (2013). A conceptual
framework for understanding why challenging behaviours occur in people with
developmental disabilities. International
Journal of Positive Behavioural Support, 3 (2), 5-13.
