Social participationDalemans RJP, de Witte L, Lemmens J, Wade D, van den Heuvel W. Measures

for rating social participation in people with aphasia: a systematic review. Clinical Rehabilitation. 2008;22(16):542-55.

What is social participation?

• International Classification of Functioning, Disabilityand Health (ICF) (WHO, 2001):

• In this study we define participation as:

`Participation is involvement in a life situation.`

`Participation is the performance of activities in social life

domains in interactions with others in the context in which

people live.`

Social lifedomains:

Domestic life

Interpersonal Relationships

Work

Community, civic life

based upon the publication: measures for rating social participation in people with aphasia, Clinical Rehabilitation, 2008

Why measuring social participation in people with aphasia?

People with a strokereturn to their homesafter a period ofrehabilitation. Therethey are oftenconfronted with asocial and physicalenvironment that isnot adapted to theirnew life situation.

based upon the publication: measures for

rating social participation in people with

aphasia, Clinical Rehabilitation, 2008

Why measuring social participation in people with aphasia?

Rehabilitation:

• Reactivation

reorganisation

compensation

• To get insight in the social

participation of people with

aphasia

How does the person with

aphasia participates in his

environment and how can we

facilitate social participation?

based upon the publication: measures

for rating social participation in people

with aphasia, Clinical Rehabilitation,

2008

How do people with aphasia participate?

A description of social participation in working age persons

with aphasia: a review of the literature

(Dalemans, R. et al., 2007 accepted):

• 1592 titles: 18 publications selected for further analysis:

• Methodological analysis:– Concepts are lacking or are vaguely described

– Measurement instruments are often self made

– Samples are often too small and select

– Controlgroups are lacking

based upon the publication: measures for

rating social participation in people with

aphasia, Clinical Rehabilitation, 2008

How do people with aphasia participate?

• Diminished participation in all social life domains:

O.a. losing jobs or return to an adjusted job, lose of authority, diminished contacts with friends, more leisuretime but less leisure time activities.

• Need for further research:

Use of a conceptual framework and reliable and validmeasurements

based upon the publication: measures

for rating social participation in people

with aphasia, Clinical Rehabilitation,

2008

Which instruments measure socialparticipation?

• Measuring:

– Actual performance

– activities

– In social life domains

based upon the publication: measures

for rating social participation in people

with aphasia, Clinical Rehabilitation,

2008

Which instruments measure socialparticipation?

• Systematic review: – 1960-2005, limits: English, electronic databases:

• Pubmed, Cinahl, Psychinfo, Cochrane

– Scored independently by three researchers using a three point-scale

2232 hits

77 relevant titles

35 measurement instruments

2 instruments through

communication with experts

37 measurement

instruments

12 measurement instruments measure

aspects of social participation as

defined

based upon the publication: measures

for rating social participation in people

with aphasia, Clinical Rehabilitation,

2008

Which instruments measure socialparticipation as defined?

7 instruments measure actual

performance:

Adelaide Activities Profile

Community Integration

Questionnaire

Craig Handicap Assessment and

Reporting Technique

Frenchay Activities Index

Nottingham Extended Activities of

Daily Living

Stroke Adapted Sickness Impact

Profile

Sickness Impact Profile

5 instruments measure actual

performance and perceived

problems (2 distinct scales):

Aachner Life Quality Inventory

Impact on Participation and

Autonomy

Life habits Questionniare

Participation Objective,

Participatio Subjective

Participation Scale

based upon the publication: measures

for rating social participation in people

with aphasia, Clinical Rehabilitation,

2008

Which instruments are possibly suitable for usein people with aphasia?

1. de uitspraken zijn voldoende kort geformuleerd

(max. 15 woorden per zin), max. 1 zin per regel

0/1/2/3

6. er wordt gebruik gemaakt van positieve taal

(ontkenningen worden vermeden in de stelling)

Inhoud totaal /30

11. Er wordt gebruik gemaakt van afbeeldingen,

foto`s

13. De antwoordkolommen zijn duidelijk van elkaar

gescheiden

Vorm totaal /12

Totaal /42

Comparison of a number of instruments scoredindependently by three researchers

CIQ: Community Integration Questionnaire, CHART: Craig Handicap Assessment, FAI: Frenchay Activities Index, NEADL: Nottingham Extended Activities of Daily Living

Which instruments are possibly suitable for use in people withaphasia according to speech and language therapists ?

Scores of 6 experts working daily with peoplewith aphasia:2 working in a rehabiliation setting, 2 working in a nursing

home, 1 working in a hospital, 1 working in a clinical practice

Which measurement instruments are possiblysuitable to measure social participation in people

with aphasia?

7 instruments measure actual

performance:

Adelaide Activities Profile

Community Integration

Questionnaire

Craig Handicap Assessment and

Reporting Technique

Frenchay Activities Index

Nottingham Extended Activities of

Daily Living

Stroke Adapted Sickness Impact

Profile

Sickness Impact Profile

5 instruments measure actual

performance and perceived

problems (2 separate scales):

Aachner Life Quality Inventory

Impact on Participation and

Autonomy

Life habits Questionniare

Participation Objective,

Participatio Subjective

Participation Scale

Two instruments are possibly

suitable: the CIQ measures

social participation as defined

based upon the publication: measures

for rating social participation in people

with aphasia, Clinical Rehabilitation,

2008