Communication information needs of family members experiencing aphasia: a qualitative phenomenological exploration

Aphasia information provision to family members (FMs) is often lacking or delayed, prolonging adjustment and management of the severe consequences of aphasia. We explored FMs' response to the communication changes when a family member acquires aphasia (PwA) in Türkiye. Specifically, we explored their experiences of navigating the healthcare system in Türkiye, aphasia information provision and communicating with PwA.

Online semi-structured interviews with FMs (n = 12) were conducted. Data were analysed using reflexive thematic analysis.

The findings revealed four themes (11 subthemes): Communication changes (challenges, strategies), information and training (unmet needs, sources, aphasia training), access to and availability of health services (interdisciplinary management, speech-language therapists, referrals), rehabilitation roles and responsibilities (cooperating with therapists, providing speech and language therapy, navigating rehabilitation programmes). The FMs described unmet information needs and unrecognised potential contribution to aphasia rehabilitation. Consequently, they described predominantly navigating this journey using their own resources.

Healthcare professionals in Türkiye need to be aware of FMs' aphasia information needs and consider whether current service delivery approaches should be revised beyond a medical model and impairment-based approaches in terms of assessment and treatment to include programmes based on Life Participation Approach to Aphasia.