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Building the “Aphasia House”: a pilot study of the needs of persons with aphasia following rehabilitation

Background: In Quebec, it is estimated that 60% of stroke patients return home without receiving rehabilitation services. During and after rehabilitation, people with aphasia (PWA) who can no longer live safely alone are placed in long-term care institutions or alternative living facilities, which are poorly adapted to their communication needs (Tessier, 2012). Moreover, even in their own community and home, PWA may experience difficulties with participation and lack of awareness about aphasia (Le Dorze, Salois-Bellerose, Alepins, Croteau, & Hallé, 2014). In response to these problems, the foundation supporting the Quebec Association of Persons with Aphasia (AQPA) plans to build the “Aphasia House”, an adapted residence for PWA that could also offer services – facilitating social integration and autonomy – beyond rehabilitation (Association québécoise des personnes aphasiques, 2013). The facility would be funded through government programs and the foundation of AQPA. Residents would rent the apartments on a monthly basis. Although the social participation of persons with aphasia has been studied, the residential needs of PWA after rehabilitation have not yet been addressed. Aims: The purpose was to explore the residential and social participation needs of PWA, according to their own experience of living with aphasia. Methods and procedures: A qualitative research method was used to acquire descriptive data. The Health Research Ethics Board (CERES) of the University of Montreal approved the project and all of the aphasia friendly documents that used simple sentences and pictograms. Thirty-eight PWA, aged between 43 and 77 years old, were recruited from the AQPA. The main inclusion criterion was that the persons were living with stroke-induced aphasia. Individuals with neurodegenerative pathologies were excluded. The data were collected through audio-recorded group interviews which varied in number of participants as per their individual schedules (minimum 2, maximum 6). The interview questions mainly concerned the transition from rehabilitation to home, preferred type of residence, and the services that should be offered in it, if applicable. Participants were given a copy of the (aphasia-friendly) questions ahead of the interview in order to prepare if they wanted to. The interviews were led in the premises of the AQPA by the first author.