CURRENT ISSUE

Living with Aphasia: Caregivers’ Knowledge, Experiences, and Therapy Expectations

Özlem Oğuz Pınar Akgün Nuray Didin
Abstract

Introduction and Purpose: Aphasia is an acquired communication disorder resulting from brain injury, most commonly due to stroke, but also associated with neurodegenerative conditions or traumatic brain events (Adikari et al., 2023). It significantly disrupts language processing, including speaking, understanding, reading, and writing, and has profound effects on individuals’ daily functioning and social interactions (Fotiadou et al., 2014; Spaccavento et al., 2013). Beyond the individuals themselves, aphasia reshapes the lives of their families and caregivers, imposing emotional, social, and practical challenges that require adaptation and resilience.

People with aphasia often face difficulties in everyday activities such as communicating needs, maintaining employment, engaging in hobbies, or participating in social events (Harmon, 2020; Sjöqvist Nätterlund, 2010). These functional limitations frequently lead to emotional difficulties, including frustration, depression, anxiety, and social withdrawal (Spaccavento et al., 2013; Vickers, 2010). For caregivers, the sudden onset of aphasia in a family member often results in stress, role changes, and emotional strain, manifesting as helplessness, fatigue, and a sense of isolation (Howe et al., 2012; Shafer et al., 2023).

Previous research highlights a consistent knowledge gap among family members, who often lack information about aphasia, its progression, and effective communication strategies (Denman, 1998; Simmons-Mackie et al., 2024). Such gaps can hinder caregivers’ confidence and contribute to feelings of inadequacy and stress. Enhancing caregiver knowledge and providing psychosocial support are crucial for improving both family coping and rehabilitation outcomes (Avent et al., 2005; Rose et al., 2019).

Speech-language therapy (SLT) is central to aphasia rehabilitation, aiming to support functional communication and social participation (Harmon, 2020). SLTs not only address linguistic deficits but also play a key role in educating and guiding families throughout the rehabilitation process (Michallet et al., 2001). Family-centered and interdisciplinary approaches, aligned with the International Classification of Functioning, Disability, and Health (ICF) framework, are essential to address both communication impairments and broader psychosocial impacts (Simmons-Mackie & Kagan, 2007). This study explores the knowledge, experiences, and therapy expectations of caregivers of individuals with aphasia in Turkey. It specifically investigates (a) caregivers’ awareness of aphasia, (b) the emotional and practical changes they experience in daily life, and (c) their perceptions and expectations regarding speech-language therapy.

Method: This study adopted a qualitative research design using thematic analysis as proposed by Braun and Clarke (2006). Thematic analysis was selected for its flexibility in identifying, analyzing, and reporting patterns within qualitative data, allowing for an in-depth understanding of caregivers’ experiences.

Twenty-eight caregivers of individuals diagnosed with aphasia participated in the study (15 women, 13 men). Participants were recruited through purposive and criterion sampling, ensuring all were primary caregivers actively involved in supporting a person with aphasia. The sample included 16 spouses (57.1%), 8 daughters (28.6%), 2 sons (7.1%), 1 sibling (3.6%), and 1 mother (3.6%). Ages ranged from 22 to 68 years, and participants represented a range of educational levels and occupations, such as homemakers, retirees, office employees, and managers. Data were collected via semi-structured, open-ended interviews conducted on Zoom, lasting between 8 and 24 minutes, depending on the participant’s availability and communication comfort. All interviews were audio-recorded with informed consent and transcribed verbatim. The interview protocol consisted of 12 open-ended questions, developed from existing literature (Cruice et al., 2006; Manders et al., 2011; Matos et al., 2014; Rose et al., 2019) and expert-reviewed by a doctoral-level speech-language therapist. Questions addressed aphasia knowledge, daily life changes, emotional experiences, coping strategies, and expectations from speech-language therapy. Data were analyzed using the six-phase thematic analysis approach by Braun and Clarke (2006): Familiarization with data through repeated reading of transcripts, generating initial codes, searching for themes, reviewing themes across the dataset, defining and naming themes, producing the final thematic report. Three researchers independently coded the data, and a fourth researcher reviewed the coding for reliability. Discrepancies were discussed until consensus was achieved. The study adhered to Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines (Tong et al., 2007).

Keywords

aphasia, caregivers, family-centered rehabilitation, psychosocial impact, speech and language therapy

References

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