1. Doing research
in people with aphasia
Yes, we can!
DALEMANS, R. J. P., WADE, D.,VAN DEN HEUVEL, W. & DE WITTE, L. (2009) Facilitating the participation
of people with aphasia in research: a description of strategies. Clinical Rehabilitation, in press
2. Speed up the apple with your nose
Is this statement true or false?
true false
3. Imagine…
You had a stroke and as a consequence an aphasia:
Your ability to speak, understand, write, read is impaired
?
How could you express How could you as a caregiver
yourself? explore what your patient
How could you explain the feels, thinks, ….
professional caregiver what How would you measure
you want to say? things when communication
is impaired?
4. People with aphasia excluded from research
Not investigated as a
separate group Interaction
Often excluded Communication
Especially when
linguistic aspects are
Aphasia
not the main
Impaired communication abilities
outcome
PARTICIPATION ?
5. Use of selfmade questionnaires very
common in people with aphasia
Systematic review
DALEMANS, R. J. P., DE WITTE, L., VAN DEN HEUVEL, W. & WADE, D. (2008) A description of social participation in
working age people with aphasia: a review of the literature. Aphasiology 22, 1071-1091.
Investigate how people with aphasia participate in life
How can we measure social participation when people have difficulties
expressing themselves and understanding verbal instructions?
Community Integration questionnaire possibly suitable
for use in people with Aphasia
Systematic review
DALEMANS, R. J. P., DE WITTE, L., LEMMENS, J., WADE, D. & VAN DEN HEUVEL, W. (2008) Measures for rating social
participation in people with aphasia: a systematic review. Clinical Rehabilitation, 22, 542-555
6. Possibly suitable Strategies and techniques in
research in people with aphasia
Qualitative research:
Prestructured-diary
In-depth interview
Focus-group interview
7. Possibly suitable Strategies and techniques in
research in people with aphasia
Qualitative research:
Prestructured-diary
In-depth interview
Focus-group interview
•Reducing time pressure
•Using a structured outlined lay-out
•Augmentative communication by using pictograms to be placed in the diaries
•Separate space in the diary for the caregiver to express his perspective
•Including the caregiver as an assistant for the person with aphasia
•Giving oral and written information concerning the use of the pre-structured diary
8. Possibly suitable Strategies and techniques in
research in people with aphasia
Qualitative research:
Prestructured-diary
In-depth interview
Focus-group interview
•Interviewer, interview-assistant, caregiver and person with aphasia present
during the interview
•Use of audio-tape
•Adressing the person with aphasia first time space
•Short questions, high frequent words
•Use of pictures, photo`s, drawings, pen and paper
•Stimulate communication in different ways
9. Possibly suitable Strategies and techniques in
research in people with aphasia
Qualitative research:
Prestructured-diary
In-depth interview
Focus-group interview
•An aphasia-friendly report before the focus-group interview
•Powerpointpresentation followed by a break
•Discussion with conversationrules
•Central key concepts visualized during the discussion
•Encourage people with aphasia to express themselves
10. Possibly suitable Strategies and techniques in
research in people with aphasia
Quantitative research:
Systematic review + other literature
Conversations with people with aphasia
Conversations with speech and language
pathologists and researcher doing research in
people with cognitive impairments
11. Possibly suitable Strategies and techniques in
research in people with aphasia
Quantitative research:
Systematic review + other literature
Conversations with speech and language for
Measurement instruments were confirmed as possibly suitable
use in this group when theresearcher doingused:
pathologists and following strategies are research in
people with cognitive impairments
• simplified language,
Conversations with people with(support by
• multimodal presentation of the questions aphasia
pictograms, drawings etc),
• a small set of response choices,
• a careful ordering of the items, and a short length.
The review suggested that questions including a negative or denial,
and/or used complex sentences, and/or imposed a large demand
upon memory should be avoided.
12. Scoring the suitability of instruments for use in people with aphasia by
three researchers
Max. score per item = 9
13. Items with
Scores: 6 speech- and regard to
language pathologists burden
working daily with
people with aphasia: Items
2 working in with
rehabilitation centre regard to
lay-out
2 working in nursing
homes
Overall
1 working in a hospital items
1 working in the first with
line regard to
suitability
14. Possibly suitable strategies and techniques in
research in people with aphasia
Systematic review + other literature
first adjustments
Tested in four people with aphasia (mild,
moderate, severe)
Fine tuned the instruments tested in
ten other people with aphasia
Conversations with five speech and
language therapists and research in
people with cognitive impairmens
15. Possibly suitable strategies and techniques in
research in people with aphasia
• using large font (size 16)
• using font style Verdana
• bolding key concepts
• reducing each question to the essence (mean question length ranged from
4,6-11,5 words)
• supporting questions with a specifically designed pictogram
• using an increased amount of white space
• supporting each response set with pictograms
• using a separate page for each question
16. Possibly suitable Strategies and techniques in
research in people with aphasia
SES: social economical status
CIQ: community integration questionnaire
LSQ: life satisfaction questionnaire
17. Possibly suitable strategies and techniques in
research in people with aphasia
example adjusted item Barthel Index
18. Possibly suitable strategies and techniques in
research in people with aphasia
example adjusted item Community
Integration Questionnaire
19. Possibly suitable Strategies and techniques in
research in people with aphasia
Film fragment : interview with person with
moderate aphasia
Measurement instruments adjusted
Interview skills:
Listening
Observing non-verbal behaviour
Stimulating
Claryfying
20. Imagine…
You had a stroke and as a consequence an aphasia:
Your ability to speak, understand, write, read is impaired
?
How could you express How could you as a caregiver
yourself? explore what your patient
How could you explain the feels, thinks, ….
professional caregiver what How would you measure
you want to say? things when communication
is impaired?
21. Doing research in people with aphasia is possible
when using adjusted strategies
Friday 15 may 2009 Ruth Dalemans
In a quantitative research 130 persons (FAST score < 27) with aphasia
were interviewed. The different strategies used to support people with
aphasia seemed to be very helpful. Different strategies were used for
different people: sometimes the bolded key concept in the question was
most helpful, while in other situations (f.e. when the person was not able
to read) the pictogram was the most important support. All the
participants stated that the pictograms as well as the bolded key
concepts were supportive for comprehension of the questions. The
person with aphasia never expressed verbally that he could not
comprehend the question, however sometimes the facial expression
indicated that the question was not understood completely. If this was
the case, the interviewer paraphrased the question (f.e. by giving an
example of an activity) without changing the content. Clinical message
One questionnaire used a 6-point scale, and it was found to be too
difficult for people with very severe aphasia to handle so much Including people with aphasia in stroke
information at the same time. The following adjustment was made to studies is possible by using several
make it possible to asses this questionnaire: The questions needed to be communication strategies.
answered in two phases. First a two-point answering set was used:
(satisfying versus unsatisfying), then a 3-point scale was used. For Measurements can be adjusted by reducing
example, if the person found that specific situation satisfying in the 2- the cognitive load and providing alternative
point scale, the 3-point scale: almost satisfying, satisfying and very forms of communication.
satisfying was used.
All the adjusted questionnaires seemed to be feasible for use in people The challenge to include people with
with aphasia, even in people with very severe expression problems. aphasia in research should be taken up in
order to promote accessibility.