Family information needs about aphasia

Background: Comprehensive aphasia treatment includes interventions aimed at assisting family and friends in learning about and adjusting to aphasia. These interventions include education-oriented information, counselling and support, and communication skill training. While the need for family training and support is recognised, there is very little empirical evidence about the content or value of such assistance at different stages of aphasia. Aims: The primary objective of this study was to identify information needed by family members at the onset of aphasia (hospitalisation), initial rehabilitation, and chronic phases of aphasia. Methods and Procedures: A qualitative approach was used for this study. Focus groups of four to six participants were interviewed. Transcripts from the focus groups were analysed using a five-stage framework approach: familiarisation, identifying a thematic framework, indexing, charting, and mapping with interpretation. A total of 16 adult family members participated in the study. Results: Three thematic recommendations were identified across the three time periods. Based on number of times cited, family members rated information about aphasia most important, followed by psychosocial support and hopefulness. The specific type of information needed by families varied depending on the time post-onset of aphasia. Conclusions: Results from this study support research and educational materials that address the needs of family members of people with aphasia. This research provides guidelines for information from the perspective of a family member.