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Translation and adaptation of the Communication Disability Profile (CDP) and the Participation Objective, Participation Subjective (POPS) Tools to the European Portuguese
Maria Matos; Luís M. T. Jesus; Madeline Cruice; & Ana Allen Gomes
ESSUA, IEETA and DCE, Universidade de Aveiro, Aveiro, Portugal;
SCHS, LCS, City University, London, UK
Practice in Portugal & rationale for the project
Talk Outline
Practice in Portugal & rationale for the project
Describe the methodology used to translate and adapt the CDP and POPS to European Portuguese
Present preliminary results in terms of suggested modifications/adaptations of these tools
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In Portugal…
Tradition of using the Medical Model
Literature on assessment and intervention with PWA is scarce
Provide Portuguese SLTs with assessment tools that address the different areas considered by the ICF (2001)
Health Condition
Disorder or Disease
Body Functions and Structures
Activities Participation
Environmental Factors Personal Factors
WHO, ICF (2001)
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CDP (Swinburn & Byng, 2006)
Enables people with aphasia to express their views and experience of what life with stroke and aphasia is like for them regardless of his/her access to spoken or written language
B & W picture based format, with 5 point (image) response scale
4 sections -
Communicative activities (20 items)
Participation (15 items)
External Influences (3 areas with sub-questions)
Emotions (14 items)
POPS (Brown, 2004)
Reflects TWO different perspectives:
The insider’s perspective of his/ her participation in home and community activitiesand community activities
The societal/normative (“outsider”) valuations
26 items – sorted into five categories: ○ Domestic Life
○ Major Life Activities
○ Transportation
○ Interpersonal Interactions and Relationships
○ Community, Recreational and Civic Life
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Research questions:How does the CDP and POPS (Portuguese versions) assess the
communicative activities, and day-to-day activities and social participation of
PWA, from the perspectives of SLTs, PWA & FM?
o What are, in the view of SLTs in Portugal, the consequences of aphasia and related sequelae of stroke in the daily lives of people with whom they work with?
o What are the consequences of aphasia and related sequelae and stroke in daily life, according to PWA and their FM?
o What are the barriers and facilitators that interfere with PWA’s social participation, as identified by PWA and their FM?
o What are the perceptions of SLTs, PWA and FM on the CDP and POPS (Portuguese versions)?
Methodology
Data obtained from three different groups:
People with Aphasia (PWA)
FamilyMembers
(FM)
SpeechLanguageTherapists
(SLTs)
FINAL RESULTS
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SLT PWA FM
2 men/8 woman = 10 SLT 11 men/3 women = 14 PWA 4 men/10 women = 14 FM
Average age = 34.9 years
(range 25-52 years)
Average age = 65 years
(range 41-80 years)
Average age = 57 years
(range 33-70 years)
7 with SLT degree3 with Master degree
Mean education of 7 years Mean education of 7.5 years
Graduated range 1976 – 2004 indifferent schools of Portugal (1 Brazilian)
(range 3-20 years) (range 4-16 years)
Average experience with aphasia =12.36 years
(range 2.6 - 31 years)
Average = 29 months post-stroke
(range 3-89 months)
Relationship:
6 spouses/ 3 daughters/ 2 friends/ 1 father/ 1 son/ 1 partner
Came from different regions of Portugal Eight had a physical impairment but were ambulant
Good English language mastery (Important as SLTs were asked to comment on translation of English items to EP)
were ambulant.
7 Anomic3 Transcortical Motor1 Transcortical Sensory1 Conduction1 Broca1 Global
SLTs: n=10
Each SLT individually
commented on the POPS
3 focus groups(n = 3, n = 3, n = 4)commented on the POPS
and CDP in terms of whether
the translated EP items were:
equivalent to original items
clear
ambiguous
( , , )
Discussed several questions relating to the research questions mentioned earlier
E.g. “What are the consequences of stroke on your patients’ lives?”
g
relevant & significant to PWA
& asked for suggestions
your patients’ lives?”
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PWA: n=14 PWA: n=4 Semi-structured interview
Aphasia-friendly topic guide & scalesASSESSED using POPS and CDP
Focused on aspects related to theconsequences of stroke and aphasia intheir levels of disability, activity andparticipation
Those with a less severe aphasia (n=7): small group interview (n = 3, n = 4)
Those with a more severe aphasia
Researcher observed participants’ reactions to POPS and CDP
Post-assessment, PWA commented on:
ease of understanding
clarity of itemsThose with a more severe aphasia
(n=7):
individual interview with total
communication strategies used &
prompted, and significant written support
(options and scales)
practical issues (such as length of tool)
relevance of the items
A topic guide interview was used for this purpose.
FM: n=14 FM: n=4
In depth semi structured interview Individually examined POPS andIn-depth semi-structured interview
focused on stroke and aphasia
consequences in their lives as well
as in their family members with
aphasia
FM with higher education level(n=6): small group interview
Individually examined POPS and CDP
At the end, the whole group discussed the issues considered the most important( ) g p
FM with low education levels (n=8):
individual interview
p
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POPS RESULTSSLT PWA FM
Content: clarity
Content: relevance
Content: unambiguous Content: unambiguous
Content: other Items related to visiting shopping centre
suggested
Think tool should compare current with
previous life situation
Religion items not relevant
Domestic items not relevant
Items related to emotional and/or psychological
issues suggested
Think tool should compare current with
previous life situation
Presentation: visuals Too complex No comment Too complex
P t ti l I t ti t l N t N tPresentation: language Instructions too complex No comment No comment
Presentation: other Too complex to use with PWA generally
Using supportive imagesfor each item
PWA thought it would take them longer to do it
if doing it by themselves
PWA able to participate if tool presented
slowly and calmly
Using supportive imagesfor each item
CDP RESULTSSLT PWA FM
Content: clarity
Content: relevance
Content: unambiguous
Content: other Suggested new translation of some items
“Emotions” items considered not an area of intervention
No comments Easier and more complete than POPS
Official letter item not relevant
FM related items should be considered
P t ti i lSome pictures ambiguous
id i lt lPictures are good
f ilit tSome pictures ambiguous
id i lt lPresentation: visuals considering cultural features
Scales too diverse and difficult to understand
facilitator considering cultural features
Presentation: language No comments No comments No comments
Presentation: other Suggested colour as a facilitator
Suggested pictures modification
Some ambiguity based in PWA reactions
Suggested colour as a facilitator
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Conclusions CDP and POPS can be important therapeutic tools and
are the first of the kind in Portugal, but they need to be difi d i d t b d i P t l ( i tmodified in order to be used in Portugal (some pictures
with cultural relevance in items and scales)
Visual presentation of POPS needs to be improved
CDP was perceived as easier for PWA then the POPS CDP was perceived as easier for PWA then the POPS (picture support)
Their content was generally considered clear, not ambiguous and relevant for Portuguese PWA
Conclusions In Portugal, PWA and FM are not used to be
consulted in the rehabilitation process as well pas in projects like this one;
During the whole project their critical capacities were minimal and only some suggestions were made;made;
A larger field study should be done in the future...
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Bibliography1. Byng, S., J. Duchan (2005). "Social Model philosophies: Their applications to
therapies for aphasia". Aphasiology 19 (10/11): 906-922.
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8. Swinburn, K.,S. Byng (2006). “The Communication Disability Profile”. London: Connect.
9. (2001). “World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF)”. Geneva: World Health Organization.
10. Worrall, L., L. Hickson (2003).”Communication Disability in Aging - From Prevention to intervention”. New York: Delmar.
“The sun shone for everyone!”“The sun shone for everyone!”
( Jorge, PWA, 2010)