Learning to be a family caregiver for severely debilitated stroke survivors during the first year in Taiwan

Stroke is a major health problem in Taiwan often causing disability and dependence for elderly persons. Family caregivers shoulder major caregiving tasks while caring for their stroke survivors at home. Despite the availability of home healthcare service for family caregivers, the quality of care outcomes remain poor. According to role acquisition theory, sufficient preparation before discharge is positively related to quality of care. Caregiver education is proposed as the way to increase quality of care outcomes, yet current educational programs in Taiwan have not incorporated three fundamental learning determinants: readiness to learn, learning needs, and learning styles. The purpose of this descriptive qualitative study was to describe the experiences of Taiwanese family caregivers learning to caregiver for a stroke survivor during the first year after discharge. Participants included 16 stroke survivors cared for by 17 family caregivers and 11 foreign care attendants during at-home and in-hospital phases. Data collection included three formal interviews and one care activity observation. While still in the hospital, family caregivers took on the caregiver role. They sought out resources to learn caregiving. They learned some care skills and stated that they felt ready to go home prior to discharge. Yet, once at-home, they immediately described a sense of uncertainty -not knowing what to do in new care situations. Fifteen challenges were identified. The most common ones were diet preparation, elimination problems, transportation, breathing and sputum problems, and rehabilitation resources. Three time periods were identified as the time for readiness to learn: before discharge, the first month after discharge, and when facing new care situations. All of the family caregivers were unprepared for the new care situations before discharge because of problematic preparation and fragmented health care services. Recommendations include further studies on the three learning determinants, development of an organized and systemic discharge planning protocol, and increased in-home nursing and rehabilitation services.