Aphasia Knowledge of Caregivers: Effects on Burden of Care and Family Life

Caregivers of individuals with aphasia (IwA) have limited knowledge about aphasia, indicating a need for information. This study aims to determine the level of knowledge of caregivers of IwA about aphasia and to examine the relationship between their level of knowledge of aphasia, family life and burden of care.

The data were collected using a participant information form, the Aphasia Knowledge Questionnaire (AKQ), the Family Aphasia Measure of Life Impact Turkish Version (FAMLI-TR), the Zarit Caregiver Burden Interview (ZBI) and the Burden Scale for Family Caregivers (BSFC).

Although they were caring for a family member with aphasia, 53.5% of the participants did not know about aphasia. In addition, 58.13% of participants scored below half of the maximum possible score on the AKQ; over 60% reported not receiving sufficient information about aphasia from their speech and language therapists (SLTs) or doctors and more than 80% expressed a need for further information about aphasia. No significant relationship was identified between the scores on the AKQ and the scores of the ZBI and BSCF; however, statistically significant strong correlations were observed between the FAMLI-ZBI and ZBI-BSCF scores (p < 0.001).

SLTs should systematically provide both verbal and written information to caregivers of IwA. They should also be aware of the changes caregivers experience due to aphasia as well as the caregiving burden associated with supporting IwA.