Experiences of family caregivers for patients suffering from dysphagia--the attempt of subjective caregiving

The purpose of this study was to investigate the experiences of family caregivers for patients suffering from dysphagia following a stroke. This study, in particular, examines an approach for subjective caregiving. Eight primary caregivers for dysphagic patients, who receive homecare from visiting nurses, were interviewed in this research. A qualitative content analysis of semi structured interviews was used to analyze transcribed interview data. The overall experience of care is explained in seven phases. Phase 1: An initiation of caring for a dysphagic patient at home with a belief that it is possible to manage the care for patient, Phase 2: The sway of mind and acceptance of the reality of coming to terms with having to take care of a dysphagic patient, and then, to take a wise decision of doing so, Phase 3: A caregiver's inner struggle to provide foods even if patients cannot enjoy foods as before, and then, to take a wise decision of doing so, Phase 4: Coexistent feelings of "whether I can continue to give the care for the patient or I can't manage the care in the future", Phase 5: The feeling of caregiver, imaging that "if I were the caregiver, I would be able to take care of the patient," is obtained, Phase 6: An approach that aims at restructuring the life of the patient and Phase 7: Adjusting and balancing dysphagic patient's care and caregiver's personal life. An implication of this research includes the importance of assessing each caregiver's experiences. These findings may provide a direction for homecare nurses and other health professionals in targeting interventions that will meet the demand for caregivers.