The use of participatory workshops in the development of a new version of the Communication Disability Profile (CDP)

Abstract

ABSTRACT Background The assessment of people with aphasia (PWA) should include the evaluation of specific language disorders and the impact of these disorders on their activities and participation in society. Due to the lack of assessment tools in Portugal aimed at the activity and participation levels of PWA, it was necessary to translate and adapt an existing instrument, the Communication Disability Profile (CDP), into European Portuguese (EP). The first EP version of the CDP (CDP-EP version 1, released originally in 2012) was further developed in this study. Aims The aim of this study was to validate the content of the CDP for Portuguese PWA using the Participatory Workshops method and to answer the following research question: Does the Portuguese version of the CDP measure the consequences of aphasia in Activity, Participation, Contextual Factors and Emotions in a Portuguese population with aphasia? Methods & Resources An expert panel of eleven PWA was consulted. The adopted methodology (Participatory Workshops) was chosen to foster critical thinking and discussion within the group. Sessions were video recorded and field notes taken. All data were transcribed verbatim and analysed using a topic guide divided in two sections: Form and content. Outcomes & Results The panel considered that the CDP-EP content (clarity, ambiguity, relevance, and extension of the instrument) was relevant and important, and the items reflected PWA’s reality, covering their needs. Though the CDP-EP was considered clear, the Activities (talking, understanding, expression, reading, and writing) and Participation (tasks that people have to do, want to do, and how things are at home; communication difficulty in a person’s daily life, i.e., going shopping, using money in a store, using public transport, getting back to work) sections were considered incomplete. Concerning form (design), the expert panel was unanimous in considering the instrument not suitable for Portuguese PWA and suggested adapting it to the Portuguese society and culture, e.g., as Portugal is primarily homogenous in ethnicity, the multiple cultural scales depicting different cultures/ ethnicities were not considered relevant. Conclusions Although the previous EP version of the CDP (CDP-EP version 1) was considered incomplete, the suggestions proposed by the expert panel consulted have been integrated making the new version of the CDP-EP an instrument able to measure the consequences of aphasia, in terms of Activity, Participation, Contextual Factors and Emotions of Portuguese PWA. Further studies need to be done in order to analyse the psychometric properties of this new version.