Rehabilitative narratives of individuals with neurological illnesses and their caregivers in a rehabilitation unit in central Taiwan: An ethnographic study

This study adopted an ethnographical approach to investigate the lived experiences of patients with recent debilitating neurological diseases and their caregivers during an early stage of their illnesses when they were hospitalized for intensive rehabilitation. A review of illness experience studies in medical anthropology, occupational science, occupational therapy, and nursing reveals that this issue has received scant attention, and neither has how these experiences are mediated by the culture of rehabilitation and medicine.; A four-month fieldwork experience in an inpatient rehabilitation unit in central Taiwan was conducted to explore the daily routines of the patients and caregivers in order to understand their lived experiences with rehabilitation. Participation observation was the primary mode of data collection, including regular observations of the daily happenings and activities of the unit, a series of taped in-depth interviews with patients, their caregivers, and rehabilitation professionals, and documentation reviews. In total, twenty-one patient and caregiver pairs were observed and interviewed. Among them, the researcher was able to observe and converse with or interview nine pairs on an almost daily basis. Thirty-three ninety-minute tapes were fully recorded and later transcribed. Several hundred field notes were recorded. Data collection and analysis was guided by the concepts of illness and medicine developed by the researchers interested in using phenomenology, narrative, critical analysis, or occupational science to understand illness experience and clinical encounters.; What was at stake for the patients and caregivers was to make sense of their illnesses and sufferings and to effect changes to reverse the life disruption. Participation in therapy in the therapy clinics, marked by pain and exhaustion, received the priority in the daily routines of the patients and caregivers. Selective Chinese pedagogical philosophies were incorporated in therapy and facilitated patients' compliance with rehabilitation ideology. Pluralistic approaches of illness and healing in Taiwan provided the framework and context for the patients and caregivers to make sense of their experiences and to seek alternative therapeutics to facilitate recovery. However, certain occupations of alternative therapeutics, such as herbal medication, were turned into an underground practice in order to comply with the primacy of biomedically-oriented rehabilitation.