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
Imagine…
You had a stroke and as a consequence an aphasia:
Your ability to speak, understand, write, read is impaired
?How could you express
yourself?
How could you explain the
professional caregiver what
you want to say?
How could you as a caregiver
explore what your patient
feels, thinks, ….
How would you measure
things when communication
is impaired?
People with aphasia excluded from research
Interaction
Communication
Impaired communication abilities
Aphasia
PARTICIPATION ?
Not investigated as a
separate group
Often excluded
Especially when
linguistic aspects are
not the main
outcome
Use of selfmade questionnaires very
common in people with aphasia
Systematic reviewDALEMANS, 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.
Community Integration questionnaire possibly suitable for use in people with Aphasia
Systematic reviewDALEMANS, 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
Investigate how people with aphasia participate in life
How can we measure social participation when people have difficulties
expressing themselves and understanding verbal instructions?
Possibly suitable Strategies and techniques in
research in people with aphasia
Qualitative research:
Prestructured-diary
In-depth interview
Focus-group interview
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
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
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
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
Possibly suitable Strategies and techniques in
research in people with aphasia
Quantitative research:
Systematic review + other literature
Conversations with speech and language
pathologists and researcher doing research in
people with cognitive impairments
Conversations with people with aphasia
Measurement instruments were confirmed as possibly suitable for
use in this group when the following strategies are used:
• simplified language,
• multimodal presentation of the questions (support by
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.
Scoring the suitability of instruments for use in people with aphasia by
three researchersMax. score per item = 9
Scores: 6 speech- and language pathologistsworking daily withpeople with aphasia:
2 working in rehabilitation centre
2 working in nursinghomes
1 working in a hospital
1 working in the firstline
Items with
regard to
burden
Items
with
regard to
lay-out
Overall
items
with
regard to
suitability
Possibly suitable strategies and techniques in
research in people with aphasia
Systematic review + other literaturefirst 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
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
Possibly suitable Strategies and techniques in
research in people with aphasia
SES: social economical status
CIQ: community integration questionnaire
LSQ: life satisfaction questionnaire
Possibly suitable strategies and techniques in
research in people with aphasia
example adjusted item Barthel Index
Possibly suitable strategies and techniques in
research in people with aphasia
example adjusted item Community
Integration Questionnaire
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
Imagine…
You had a stroke and as a consequence an aphasia:
Your ability to speak, understand, write, read is impaired
?How could you express
yourself?
How could you explain the
professional caregiver what
you want to say?
How could you as a caregiver
explore what your patient
feels, thinks, ….
How would you measure
things when communication
is impaired?
Doing research in people with aphasia is possible
when using adjusted strategiesFriday 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.
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
information at the same time. The following adjustment was made to
make it possible to asses this questionnaire: The questions needed to be
answered in two phases. First a two-point answering set was used:
(satisfying versus unsatisfying), then a 3-point scale was used. For
example, if the person found that specific situation satisfying in the 2-
point scale, the 3-point scale: almost satisfying, satisfying and very
satisfying was used.
All the adjusted questionnaires seemed to be feasible for use in people
with aphasia, even in people with very severe expression problems.
Clinical messageIncluding people with aphasia in stroke
studies is possible by using several
communication strategies.
Measurements can be adjusted by reducing
the cognitive load and providing alternative
forms of communication.
The challenge to include people with
aphasia in research should be taken up in
order to promote accessibility.
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