Life Participation with Aphasia: Focus Groups with Community-Dwelling Stroke Survivors

Aphasia is the loss of ability to express or understand language, most commonly caused by stroke. Aphasia is chronic and impacts the lives of one third of stroke survivors, as well as the lives of their caregivers. Limited communication in daily living activities can pose extreme challenges for people with aphasia. Assessments of functional communication problems for people with communication disabilities in their actual life environments are limited. In addition, people with “hidden” disabilities related to cognitive, communicative, and behavioral deficits experience greater degrees of societal exclusion compared to people with physical disability (Report of WHO & World Bank, 2011). This highlights the need to develop better functional communication outcome measures. The long-term purpose of this research is to develop a functional outcome measure addressing communicative participation. Focus groups were conducted from people with aphasia and their family members to elicit and analyze meaningful stakeholder input. This determines how they perceive communicative participation with aphasia and to identify content domains that stakeholders consider critical in a communicative participation outcome measure. Five focus groups, two with family members, two with people with aphasia, and one mixed group interview were conducted and recorded. Using a qualitative analysis approach, responses were transcribed and coded. Through an iterative process of comparison, grouping, and categorization, themes were identified. The interviews provide personal perceptions on the implications of living with aphasia and caring for someone with aphasia. Introductory analyses have uncovered many similarities in how persons with aphasia and their caregivers view life post-stroke. For example, both parties touched on the importance of using humor to cope with their situations. Further analysis of the data will reveal more insights regarding content domains that a novel functional outcome measure should include in order to meaningfully capture communicative participation