[Experience of family caregivers caring for patients with stroke]

The hospital mortality rate for stroke patients is now approximately 20%. Those who survive stroke are discharged to home disabled and the responsibility for providing adequate care to the patient has fallen primarily on family members. Maintaining the patients in the community may be ideal but it is not without cost. Although it is known that the role of family is critical to stroke rehabilitation, relatively few studies have examined caregiving within context of stroke, and nursing care is still limited to the patients ignoring family caregivers. Therefore, this study using grounded theory method was carried out to explore and explain the experiences of family caregivers from the time of the incidence throughout the course of stroke. The informants of the study were 24 family caregivers caring for the patients with stroke at hospitals or their homes. The study was conducted from March through August, 1992. Data were collected through in-depth interviews, telephone interviews and participant observation. Data collection and analysis were conducted concurrently allowing theoretical sampling and facilitating hypotheses to evolve. According to the results, caregiving has been associated with a range of negative experiences including emotional crisis, physical discomfort, guilty feeling, anxiety, feeling of social isolation, depression, hopelessness, and financial difficulties. Caregiving activities, commitment, recovery pattern accounted for the experiences of family caregivers, and the experiences varied according to the phases of the patient's recovery. The experiences of family caregivers are; emotional crisis upon a sudden occurrence of stroke; physical discomforts during hospitalization and the period the patients need an assistance with bathroom; feeling of social isolation beginning after discharge; and depression, hopelessness thereafter. Anxiety regarding the recurrence of stroke and the patient's prognosis was intensified with the patient's discharge to home. Guilty feeling was related to the caregiver's perceived role inadequacy. The type of relationship between caregiver and patient, sex of caregiver, and caregiver's financial status correlated to the experiences of family caregivers. Considering all the factors being related to such experiences as mentioned above, the following hypothesis were evolved. (1) The family caregivers who perceive that the patient's recovery has not reached their expectation feel higher level of anxiety. (2) Daughters-in-law feel the caregiving experiences more negative than spouses or adult-children. (3) Unmarried adult-children and daughters-in-law feel more of social isolation, depression, and hopelessness when the period of caregiving lasts longer. (4) Family caregivers who are male and self-supportive receive higher family support and feel the caregiving experiences less negatively.(ABSTRACT TRUNCATED AT 400 WORDS)