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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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3 C t C ld A (1979) Di ó ti l ã d f i d3. Castro-Caldas, A. (1979). Diagnóstico e evolução das afasias de causa vascular . Faculdade de Medicina de Lisboa. Lisboa.

4. Davidson, B., L. Worrall, L. Hickson (2008) “Exploring the interactional dimension of social communication: A collective case study of older people with aphasia”. Aphasiology 22(3)235-257.

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6. Pound, C., S. Parr, J. Lindsay, C. Woolf (2001). “Beyond Aphasia - Therapies for Living with Communication Disability”. Oxford: Speechmark.

7. Sarno, M. (1993). "Aphasia rehabilitation: psychosocial and ethical considerations". Aphasiology 7: 321-334.

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)