Juliet Goldbart
Research Institute for Health & Social Change,
Manchester Metropolitan University, U.K.

Derived from medical research and thinking,
(e.g. Sackett et al, 2000).
 Now applied to education, health and social
care, criminal justice policy and practice etc.
 The integration of best available research
evidence with professional expertise and
service user values.
 BUT the focus always seems to be on the
research!
Two inter-related projects:

Communication and people with the most
complex needs: what works and why this is
essential? Funded by Mencap and Dept. of
Health Valuing People team.

Survey of U.K. speech & language therapists
working with children and adults with PMLD.
Children and adults with
 Profound disabilities
 Severe autism
 Severe learning
disability and
challenging behaviour
• Survey of intervention literature
• Interviews and focus groups with
parents and family carers
• Email “interviews” via the PMLD
Network
• Email “interviews” with
international group of experts
• Data from UK SLT survey
• What are the most useful strategies
• What are the most useful strategies in
communicating with your son or
daughter?
• What should other people know
about your son or daughter’s
communication?
• What communication strategies help
your son or daughter have some
participation in the community?

We used family members views as a proxy for
the views of people with PMLD/CCN.

What are the problems with this?

What else could we have done?

How do you determine what the people you
work with think of their education and
therapy?
• What are the most important strategies
that communication partners can use to
facilitate successful communication
with people with CCN?
• What communication skills can people
with CCN learn or use to support their
community engagement?
• What are the most important issues and
components in training staff to work
with CCN?

Interviews, focus groups and email
“interviews” with 30 parents and family carers
of children and adults mainly with PMLD or
SLD and severe challenging behaviour.

Email “interviews” with 11 professional
experts from Australia, UK and Netherlands,
including teachers, psychologists and speech
& language therapists.

55 respondents.
Selected Aims

To determine what communication intervention /
therapy approaches are used by UK SLTs working
with children and adults with PMLD.

To explore SLTs’ rationales for their choice of
interventions. Qualitative data, Content
Analysed.
Literature search found SOME evidence for:
 Switch-based interventions
 Intensive interaction
 Staff (and parent) training
 Symbolic approaches (for more able people)
 Creative and narrative approaches
 Environmental modification
 Objects of reference
Level and Type of Evidence
1a
1b
2a
2b
3a
3b
4
5
Systematic Review or Meta-Analysis of RCTs
A single Randomised Controlled Trial (RCT)
Systematic Review of Cohort Studies
A single Cohort Study
Systematic Review of Case Control studies or
Quasi Experimental studies
A Single Case Control Study or Multiple Baseline
SSED design
Non experimental descriptive studies e.g.
correlation studies and other Single Case
Experimental Designs
Expert opinion, textbooks, “first principles”
research

Operating switch results in a reliable
consequence, teaching intentionality.

Intentionality as a step towards intentional
communication, e.g. gaining attention (Lancioni
et al., 2009) and understanding, making and
conveying choices (Lancioni et al., 2006a & b).

Evidence: mainly 3b

Used by 10.9% of UK SLTs.
Based on the responsive, individualised
interactions between babies and caregivers.
 Aims to develop enjoyable interactions,
increasing sociability.
 Devised by Hewett and Nind (e.g. 1998)
 Evidence, mainly level 3b (e.g. Leaning &
Watson, 2006; Samuel et al., 2008; Zeedyk et al.,
2009).
 Used by 85.5% of SLTs.


Long history of research supporting the use of
symbols for communication for adults with
learning disability (e.g. Beck et al., 2009) and
children with autism (e.g. Nunes, 2008)

Approaches include Makaton, Signalong, PECS,
Boardmaker and photographs.

Used by 29.1% of SLTs.

Relevance for these learners / clients?

Many staff “failed to adjust their language to
meet service users' needs,” (Healy & Noonan Walsh,
2007).




Bloomberg et al (2003) 6 month staff training:
limited changes in knowledge and attitude, but
improved interactions with clients.
Staff can learn a core sign vocabulary, but tend
not to use it (Chadwick & Jolliffe, 2009) .
Evidence: typically 3b/4 but variable outcomes.
Little evidence of sustainability.
Used by 27.3% of SLTs.
Long tradition of music therapists working with
people with LD in a therapeutic manner (e.g.
Warner, 2007).
 Other approaches draw on the parallels between
music and language &/or communication
(Graham, 2004; Perry, 2003).
 Evidence: Modest mainly level 4.
 Multisensory approaches or music are used by
43.7% of SLTs.

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
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Language and multisensory props are used to
construct a narrative.
Social (Ali & Frederickson, 2006) or sensitive stories aim
to aid understanding of a social or personal situation.
Sensory or multi-sensory stories (Young, 2011) provide
the learning opportunities and pleasure of engaging
with a story, without the need to understand
language.
Evidence: modest and some contradictory (e.g. Penne
et al., 2012) – level 3b/4
Multisensory approaches or music are used by 43.7%
of SLTs.





Use of familiar object cues to signal what is
about to happen and to offer choices (e.g. Park,
2002).
A concrete link into language, through
increasingly abstract representations:
Index Icon Symbol.
Evidence: 4 BUT only one study with equivocal
results (Jones et al., 2002).
Used by 72.7% of SLTs.



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Changes made to the environment, providing
opportunities for communication or
engagement with people, objects and events.
“inconsistent effects of Snoezelen®
environments on observable behavior,
generalization of behaviors, and relaxation”
(Botts et al., 2008)
Evidence: more research needed (Botts et al.,
2008; Stephenson & Carter, 2011).
Used by 27.3% of SLTs
Way of capturing and sharing information to
facilitate interactions by helping less familiar
people recognise potentially communicative
behaviour (Millar & Aitken,2003)
 Not an intervention per se, but making the
passport involves detailed discussion among
significant others and information sharing
 Evidence: no formal evaluations
 Used by 30.1% of participants

Parents and professional experts agreed:
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.
Parents and experts agreed:
• Capturing and sharing
information is crucial.
• Communication passports and
hospital passports quite widely
used, more with adults than
children and highly valued.
• It enabled hospital staff to “see my son as a
person” (parent).
An absence of findings.
• Not widely used in UK.
• BUT the approach with the
most evidence.
• A route into communication including AAC.
• Reported by small numbers of parents and
experts.
• Resources for practitioners are available.
Good research and practice needs to be shared.
 People who know the
individual well should be
closely involved in training
staff.
 Attitudes & characteristics: Consistent, patient,
empathetic, caring, committed, prioritise service
users, trustworthy, understand health and
behavioural issues, able to form relationships.
 Knowledge & Skills: Specific approaches; that
challenging behaviour may communicate pain.
Signing (15 BUT some have reservations and 5
report idiosyncratic use);
 Photos or symbol books (8);
 PECS (8 BUT 4 have reservations);
 High-tech AAC (5);
 Intensive Interaction (2);
 Single switches, e.g. BigMack (2);
 Music Therapy (2); Objects of Reference (1).
Are parents aware of all approaches used??

Parents reported informal strategies more often than
specific intervention approaches:

Taking time to become familiar with the individual,
their personality and communication style,

Consistency and use of familiar routines,

Clear, simple input,

Value of music,

Opportunities to make choices,

A smile and a communication passport are key to
community inclusion.
Specific interventions recommended:
 Intensive Interaction (7/11)
 Objects of Reference/Object or sensory cues (6/11)
 Creative or narrative approaches (5/11)
 AAC (to support comprehension and expression,
low, light and high tech) (5/11)
 Hanging Out Programme (3/11)
 InterAACtion (3/11)
Above all: Individualise approaches and keep the
individual client at the centre of decision-making.
Intervention
Research
evidence
Parent
values
“Expert”
opinion
SLT Use
Switchbased
Mainly 3b
Limited
support
5/11
support
AAC…..
Limited
10.9%
Intensive
Interaction
3b and 4
Limited
support
7/11
support
Extensive
85.5%
Objects
One level
of
4 only
Reference
Limited
support
6/11
support
Extensive
72.7%

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Attitudes of communication partners are central.
Parents may not be aware of interventions used.
Parent involvement in staff training and an
emphasis on informal strategies would be valued.
A range of interventions are valued by
professionals, but not all are supported by evidence.
Further research is needed in particular on
commonly used approaches, including
Communication Passports, for which we have little
evidence of success.
Mencap project report is free at
www.mencap.org.uk/all-about-learningdisability/information-professionals/communication
Or
http://www.netbuddy.org.uk/static/cms_page_media/52/C
ommunication.pdf
j.goldbart@mmu.ac.uk