Transcript Critical Appraisal of Methods of Measuring Outcomes in AAC

Quality Indicators for AAC
Sally Boa and Lois Cameron
Funded by NHS Education Scotland
Conducted by Talking Mats Limited and
Capability Scotland
Overview of Quality Indicators
3. Train Disability
Equality associates to
carry out interviews
using Talking Mats.
Agree on final symbols
for use with Talking
Mats
4. Conduct
individual
interviews (n = 12)
5. Conduct focus
groups
2. Design and
distribute on-line
survey
1. Complete NHS
ethics application
(n = 4)
Identification
of quality
indicators
6. Analyse data
from all sources
Aims
• To develop, in partnership with individuals
who use AAC, a set of quality statements
relating to the AAC service in Scotland
How?
• On-line survey (27 responses)
• 4 Focus groups (2 with adults, 2 with children)
• 12 Individual interviews
• Range of areas (all NHS Scotland areas
represented apart from Dumfries and Galloway,
Grampian, Highland and Orkney)
• All data analysed using Framework Analysis
Adapted the quality statements from
Communication report (CM 2012)
• Translated into user friendly questions under
three headings :
– People who work with me
– Information
– How AAC services work
(Structured conversation for individual and focus
group using Talking Mat framework)
1. People who work with me
2. Information provided
Process
1a. Know about me
2a. Outcomes of assessment and plan for
implementation
3a. Stick to a care pathway
1b. Keep up to date with AAC and have
access to training
2b. In a way that I can understand
3b. Gaining funding
1c. Know about AAC
2c. Who is who and contact details
3c. Local services
1d. Work as part of an AAC team
2d. named person/keyworker
3d. National services
1e. Talk about me to other members of the
team
1f. Take my preferences into account
2e. Timescales
3e. Provide long-term support
2f. Funding
3f. Access to a second opinion
1g. Have time for me
2g. My care pathway
3g. Clear about when to refer on
1h. Put me in touch with other AAC users
1i. Involve me in decisions
3h. Work with Health, Education and Social
work
3i. Provide trial equipment
1j. Involve me in target/goal setting
3j. Access to a range of equipment
1k. Look at my needs regularly
3k. Early introduction to AAC
1l. Provide training for me
3l. Clarity about who is keyworker
1m. Provide training for my family
3m. AAC is adapted to suit my needs
1n. Provide training in my wider
environment
1o. Check they have my consent to work
with me
1p. Work on their own
3n. Equal access to Assessment and
intervention
Individual and focus group interviews
• Capability Scotland’s Disability Equality
Advisors
• Different perspective
• Shared values
Findings
• 10 Quality indicators for AAC services in
Scotland were identified
1.Training
• All participants felt that the people who worked with them
should provide them training:
• “If a person does not know how to work their AAC aid then
the speech therapist isn’t doing their job” (interview 8)
• Training should be provided for family and friends:
“It’s really important that my sons and the nurses who
come in to look after me understand my machine.”
• Not everyone agreed that this was as important as
individual training:
“someone has to learn and then they are the person that
tells the others - family user is less important than the
main user” (interview 1)
2.Values
• All participants agreed that it was important for
AAC professionals to listen to their views and to
really know you as a person :
– “They can’t provide for your needs if they don’t know
you” (Survey)
– “It’s important that the people I work with can
understand what I'm saying and this takes a while to
develop” (interview 10)
• One participant commented that AAC
professionals should be flexible and, as part of
valuing individuals, should have the scope to
work flexibly them:
– “We found that SLTs can get locked into a way of doing
things. This is done here.” (interview 1)
3. AAC Keyworker
Participants agreed that:
• they should have a clear point of contact in
relation to AAC:
• Roles and responsibilities should be defined and
explicit:
“Really need to know about roles and
responsibilities – who does what – what does the
teacher do, what does the SLT do and what does the
parent do” (interview 1)
4. 4. Involvement in decision making
Participants believed
they should be:
• involved in decisions
• kept informed
• Given information in
a accessible form
And that services
should work together
to achieve defined
goals.
“somebody
has to have
awareness of what is realistic
in time scales and help you
set realistic targets” (survey
respondent)
“That you should know how
long things will take. People
who are disabled have to
plan, therefore it is really
important to know how long
things will take.” (Interview 8)
5.Suitability and adaptability of AAC
equipment
Participants believed that AAC
equipment should be suitable
and adapted to meet their
individual needs
• Including developmental
growth
• Future life changes
• Future technology changes
Opportunities to access and
trial a range of equipment was
also seen as vital, as was a
holistic approach
“In our particular case AAC
support is lifelong. It has to
be able to change according
to the challenges and
continuum of life. Also the
quickly changing world of
AAC in a modern
technological age.” (Survey)
Janet’s story
• Janet was formerly a very effective LLL (Language Living and
Learning, a Minspeak-based programme) user on her Delta
Talker.
• She then moved on to a Vantage system
– occupational therapist thought having a smaller device would
give her a better range of movement. The new system had
fewer keys than Janet was used to.
• Since getting her new device, Janet has found it extremely
difficult to learn to use. It is particularly difficult for her to
re-learn the placement of the buttons and how to access
the correct ‘layers’ on the new system.
• As a result, Janet prefers to use her communication book or
to spell words out on her hi-tech device. (Focus group 3)
6. Equal access to funding and services
• Access to equipment and
services should not depend on
geographical location or
whether they had a
particularly ‘good’ Therapists
• Opinion varied about whether
services should be provided at
a local or national level
– some preferred local but
recognition that not all staff
could be specialist and
therefore a national service
that could support the local
was seen as important.
“we had to fund our son’s own AAC as
the one provided by our local NHS
trust was unreliable” (Survey)
“we were lucky we had a really great
SLT who saw the underspend and got it
but not everybody is that lucky.”
(interview 1)
“it shouldn’t matter where you live or
how much money you have there
should still be the same access to
services.” (interview 5)
“Being in a remote location it might be
unrealistic to have a local service, but
strong local knowledge is brilliant,
with the support of national service”
Survey
7. The importance of support in the
event of breakdown
•
Several individuals were
unable to fully participate in
this project because their
devices were either broken
or inadequately maintained.
• Others explained that they
had waited months or even
years for their High-tech
AAC machines to be fixed
leaving them unable to
communicate effectively.
• “Joe has no other means of
communication when his
Lightwriter isn’t working. He
doesn’t even use an
alphabet board to
communicate.” (Focus group
3)
• “You kind of assume that
everything will take a long
time” (interview 1)
8. Transitional support (between
AAC systems)
• Participants highlighted that their programming and stored
information can be lost when they make a transition from
using one AAC device to another. Trialling new equipment can
also be meaningless if the trial is too short and does not allow
time for the machine to be properly programmed and for the
individual to get used to it.
“David told the group that he had his new Pathfinder in the
house for three months before he really knew how to use it
properly. He felt there should be enhanced support when new
machines are introduced – losing all his short cuts was a real
problem’
9. Suitability of design of
equipment
• Particularly an issue for school age
participants – the cool factor
– colour
– weight
“Karen said that it was really important to her that
her Talker was purple, because that is her favourite
colour.” Focus group 2
10. AAC in the wider community
• One young focus group participant expressed anxiety at the
idea of going to a respite service because she was worried
that staff and other children would not be able to understand
what she was saying.
‘I’m going to respite this weekend and I’m worried people
won’t understand me” (Focus group 2)
• A sense of confusion for some of the younger participants
about why AAC works in some settings and with some people
but not others
“I can use my machine with nice people” and “ It’s easier with
my Mum and Dad”. She then went on to say, “When I’m out
people don’t understand me” (Focus group 2)
• Other participants highlighted the need for the wider
community (for example shop workers) to be aware of AAC
and how to communicate with people who use it.
Observations – potential Risks
• Adults living in residential care appear to have
less communication support and less access to
high tech equipment than those living with
their family or independently in the
community.
• There appears to be disparity between the
high standard of communication support
enjoyed by children in specialist schools and
the lack of such support at adult residential
services
Rural Isolation
• AAC users living in rural areas appear to be at risk
of feeling isolated.
– “Sarah is the only person in her day centre or area
with AAC needs and she is very isolated. Although
meeting other AAC users is one of the highest
importance this isn’t happening for Sarah as she is the
only person in the area using AAC and therefore is very
isolated and shunned by others at her learning
disability day centre.” Interview 12
– “We live on a remote island with few AAC users.
Opportunities to attend conferences and parent
groups provided essential networking and learning
and friendship” (survey)
Summary
• Value of getting the views of people with
communication disabilities
• Importance of really listening to the views of AAC
service users
– Needs to be on-going
– Could it be woven into AAC services so that these are
evaluated from a user perspective?
– How to do this genuinely?
• Use these indicators as a measure of service quality
– Link with the Scottish AAC Education framework