Environmental factors and participation: the point of view of persons with brain injury and aphasia and that of their proxies.
Prof Guylaine LE DORZEa, Mrs Christine ALARY GAUVREAUa, Mrs Marie-Pierre TURCOTTEb, Mrs Jeanne MASSICOTTEa, Mrs Cynthia PERREAULTa, Prof Claire CROTEAUa
a Centre de recherche interdisciplinaire en réadaptation de Montréal, Université de Montréal, b École d'orthophonie et d'audiologie, Université de Montréal
Aims: The physical, social and attitudinal environment has been little studied to determine its impact on the participation of individuals with aphasia and family members. Participation -- taking part in real life situations -- is restricted not only by an individual’s physical or communication limitations1 but also by the quality of the environment. This study explored the perception of individuals with ABI and aphasia and their relatives about the impact of the environment on their visit to a shopping center, a situation of participation.
Methods: Eight persons with aphasia and eight of their relatives participated in small focus group discussions of 3-5 individuals. The interviews collected was analyzed using a qualitative methodology and classified according to the five environmental factors of the WHO International Classification of Functioning, Disability and Health.
Results: Physical aspects of the environment (i.e., unsuitable physical adaptations, noise, narrow aisles) were the most mentioned barriers to the participation of persons with aphasia in public places. Secondly, the attitudes and behavior of staff and other customers were also sometimes unfavorable. For example, staff members were often unable to address the person with aphasia in a manner that fostered communication. Moreover, the largest facilitator for outings to a shopping mall was the help provided by relatives. However, some attitudes such as the desire to protect the other or the lack of knowledge about how to help the person with aphasia had some negative impact on participation.
Discussion: Currently, rehabilitation services rarely involve persons with aphasia and family members enough in participation activities in public places. The results of this research confirm that rehabilitation should better integrate the participation needs of people affected by aphasia. In turn, this will contribute to a more inclusive society.
Reference: 1Le Dorze, G., Salois-Bellerose, E., Alepins, M., Croteau & Hallé, M.-C. A description of the personal and environmental determinants of participation several years post-stroke according to the views of people who have aphasia. Aphasiology 2014 ; 28:421-439.
Keywords : participation, environmental factors, aphasia, close-others