Doing Research Third Imagery Conference

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

Speed up the apple with your nose

Is this statement true or false?

true false

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




Prestructured-diary

In-depth 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




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




Prestructured-diary

In-depth 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



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



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


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



• 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



SES: social economical status

CIQ: community integration questionnaire

LSQ: life satisfaction questionnaire



example adjusted item Barthel Index



example adjusted item Community

Integration Questionnaire



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.

Documents

Doing Research Third Imagery Conference