Transcript Juliet Goldbart and Susan Buell

COMMUNICATION AND PMLD: THE
CHALLENGE OF EVIDENCE-BASED
PRACTICE
Juliet Goldbart, Susan Buell
& Darren Chadwick
Manchester Metropolitan University,
University of East Anglia,
University of Wolverhampton
Aims of Paper
• To consider the communication skills and
needs of children with PMLD
• To consider the challenges of EvidenceBased Practice (EBP) with reference to
this group
• To examine communication interventions
appropriate to children with PMLD with
reference to EBP
People with PMLD 1:
• Have extremely delayed in intellectual and
social functioning
• May have limited ability to engage
verbally, but respond to cues within their
environment
• Often require those familiar with them to
interpret their communication intent
• Frequently have associated medical
conditions
(Bellamy et al., 2010, p.233)
People with PMLD 2:
Typically
• Intellectual impairment is so profound that
formal testing is not feasible (Nakken &
Vlaskamp, 2007)
• Experience profound neuromotor dysfunction
(Arvio & Sillanpaa, 2003)
• And sensory or perceptual disabilities
(Evenhuis et al, 2001; van Splunder et al, 2003)
• Communication is at a pre or early
symbolic level (Iacono et al, 2009)
Defining Evidence–Based Practice
• Derived from medical research and thinking,
applied widely in health, education & social
care
• The integration of best available research
evidence with clinical expertise and patient
values (Sackett et al, 1996)
• ‘….uses research evidence together with
clinical knowledge and reasoning to make
decisions about interventions that are
effective for specific clients’ (Law & Baum, 1998,
p131)
Levels of Evidence
Level
Type of Evidence
1a
Systematic Review or Meta-Analysis of RCTs
1b
A single Randomised Controlled Trial (RCT)
2a
Systematic Review of Cohort Studies
2b
A single Cohort Study
3a
Systematic Review of Case Control studies or
Quasi Experimental studies
3b
A single Case Control Study or Multiple Baseline
SCED design
4
Non experimental descriptive studies eg correlation
studies and other single case experimental designs
5
Expert opinion, textbooks, “first principles” research
Challenge of EBP in PMLD - 1
Production of knowledge (e.g. Burton &
Chapman, 2004; Odom et al., 2005)
• Challenges of controlled research studies in
education and social care settings, e.g.
•
•
•
•
Controlling social variables,
Frequent staff changes,
Service emphasis on individualisation,
Complex and multiple interventions.
• Low prevalence and heterogeneity of
potential participants.
Result? A dearth of evidence
• Many interventions in learning disabilities are
‘of uncertain value and which have never
been tested’ (Parmenter, 2001, p.191).
• In relation to PMLD, “researchers have
shown a limited interest in providing an
empirical base for these interventions”
(Vlaskamp & Nakken, 2008, p.334).
• “randomized trials are rarely applicable for
students from a low incidence population”
(Snell, 2003, p.143).
Challenge of EBP in PMLD - 2
Research – Practice Gap (Burton & Chapman,
2004; Mansell, 2010; McDonnell & O’Neill, 2003; Snell,
2003)
• Practitioners may have limited access to
research findings
• Insufficiency of relevant evidence
• Research findings may contradict long held
beliefs and practices
• Family, legal and service pressures may
affect decision-making
Addressing the challenges?
Single Case (single subject) Experimental
Designs (Kazdin, 2011; Romeiser-Logan et al., 2008)
•Used to demonstrate a functional relationship
between DV and IV
•Each participant serves as one trial and as
their own control
•Quite commonly used in special education
research
•Practitioners can contribute to the evidence
base (Cakiroglu, 2012; Horner et al., 2005)
EBP and SLT: A worked example:
• Reviews identified 6 approaches with some
evidence: Intensive Interaction, Switchbased, Objects of Reference, Creative Arts
(Warner, 2007; Young, 2011), Environmental
(Vlaskamp et al, 2003; Botts et al, 2008), Staff
Training (Bloomberg et al., 2003; Damen et al., 2011).
• A survey of approaches used by speech &
language therapists (Chadwick et al, 2009)
• Interview and focus group study identified
parents’ views (Goldbart & Caton, 2010)
www.mencap.org.uk/node/6185#node-6185
Intensive Interaction
• Developed by Nind and Hewett (e.g. Hewett &
Nind, 1998; Nind & Hewett, 2006).
• Based on the highly responsive,
individualised interactions between babies
and their caregivers.
• Described primarily as a way of building up
enjoyable interactions between people with
complex communication needs and
significant others, increasing sociability.
• Predominantly used in UK and Australia
Intensive Interaction: Evidence
• A growing number of formal evaluations since
Nind (1996) including some SCEDs
• Positive changes in observable behaviour
related to interaction ability (Leaning & Watson,
2006).
• II results in rapid increases in social
engagement (Zeedyk et al., 2009).
• Care staff can learn to use II but find it hard
to embed in daily routine (Samuel et al., 2008).
• Level of evidence: mainly 3b and 4
Switch-based interventions
• Using simple switches or other cause &
effect devices to help people with pmld
understand that their actions have
consequences, i.e. intentionality.
• Intentionality can be seen as a step
towards intentional communication.
• Can enable people with PMLD to gain the
attention of others and understand, make
and convey choices.
• May lead into more advanced AAC, i.e.
augmentative & alternative communication
Switch-based approaches: evidence
• Lancioni et al. 2001 review paper: 20 studies,
1 to 15 pts. Mainly multiple baseline. Largely
positive results.
• Typically SCEDs but with few iterations
• People with PMLD can learn to make and
convey choices, (Lancioni et al., 2006a & b).
• and to gain the attention of other people for
social contact, (Lancioni et al., 2009)
• Use research rather than naturalistic settings,
except Barber 2000 & Singh et al 2003
• Level of evidence: 3b
Objects of Reference
• To signal what is about to happen and to
offer choices.
• A concrete link into language, through
increasingly abstract representations:
• Index: objects are used which are a direct
part of the event they refer to.
• Icon: using an object which has a concrete
relationship to the action or event, but is not
part of the event.
• Symbol: using a more abstract
representation; a transition into using a
symbol system.
Objects of Reference: evidence
• Only one published evaluation with this client
group: Jones et al. (2002) showing modest
success with adults.
• Very large number of web documents
including school guidance, courses and
information sheets, but many bear little
relation to the version which was evaluated.
• Type of evaluation –small quasi experimental
study
• Level of evidence -3b/4 BUT only one study
Clinical expertise
Survey of UK SLTs working with children
and adults with PMLD: Selected Aims
• To determine what communication
intervention approaches are used by SLTs
working with children and adults with
profound intellectual disability.
• To explore SLTs’ decision-making
regarding choice of interventions.
(Chadwick et al., 2009; Goldbart et al., in preparation)
Frequency of Use by SLTs (n=55)
(Goldbart, Chadwick & Buell, In preparation)
Intervention
Overall
Adult
Child
N
%
N
%
N
%
Intensive interaction
47
85.5
32
91.4
23
79.3
Objects of Reference
40
72.7
27
77.1
20
69.0
Creative Arts / Multisensory
24
3.7
14
40.0
15
51.7
(Communication Passports)
17
30.9
15
42.9
4
13.8
(Symbolic interventions)
16
29.1
8
22.9
12
41.4
Environmental Modification
15
27.3
10
28.6
8
27.6
Staff Training
15
27.3
13
37.1
4
13.8
6
10.9
5
14.3
2
6.9
Switch-based cause & effect
Clients’ or their proxies’ values
It is difficult to access views and values of
people with PMLD (Ware, 2004).
• Observational approaches (e.g. Grove et al.,
2000; Coupe-O’Kane & Goldbart, 1998)
• Physiological measures (Vos et al., 2010)
• Talking Mats (Murphy & Cameron, 2008)
• Proxy perspectives: family carers & direct
support staff (e.g. Goldbart & Caton, 2010; Windley &
Chapman, 2010)
Mencap study: Parents’ View (n~30)
• Communication with people with the most
complex needs is most successful with
familiar, responsive partners who care about
the person with whom they are
communicating.
• Few intervention strategies were identified by
parents (Intensive Interaction=2, Switching=2
Objects of Reference=1)
Implications for EBP
Intervention
approach
Research
evidence
Clinical
expertise
Parent
values
Microswitching
Quite
strong
Many 3b
Some &
growing
Many 3b/4
Very
limited
1 x 3b/4
Limited
support
10.9%
Strong
support
85.5%
Strong
support
72.7%
Limited
support
Intensive
interaction
Objects of
Reference
Limited
support
Limited
support
Implications:
For knowledge production
• More research is required for all interventions
For the research – practice gap
• Opportunities are missed due to limited use of
switch-based interventions (Mansell, 2010),
implies training and resources are required.
• Practitioners need support and training
accessing and appraising relevant evidence.
• Involving practitioners in knowledge production
using SCEDs might reduce the gap.
Implications for working with
family carers
• Parents need more information on
communication approaches used with their
sons and daughters.
• Parents and experienced support staff can
contribute their knowledge to support choices
of intervention and outcomes.
• More training could be available to family
carers.
Thank you
• Any questions?
• References and slides available from
[email protected] or [email protected]