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만성환자를 돌보는 가족은 의료지식이 전혀없고 환경적 준비나 심리적 준비가 되어 있지 않은 상태로 환자를 돌봄으로써 여러가지 부정적 경험을 하게 된다. 특히 뇌졸증은 질병의 특성상 발병률 및 사망률이 높고 급성기에 사망하는 20%외의 환자 대부분이 가정으로 돌아가 가족에 의해 보살펴 지고 있으나 이들에 대한 연구는 80년대 이후에 보고된 몇 편의 외국논문이 있을 뿐 우리나라의 논문은 찾아보기 어렵다.
따라서 이 연구는 입원에서 부터 가족이 함께 하고 전통적 사고방식이 내재한 우리의 현실에서 뇌졸증 환자를 돌보는 가족의 경험이 어떠한가를 파악하고 설명하고자 근거이론 방법을 이용하였다.
연구결과에 의하면 뇌졸중 환자를 돌보는 가족의 경험은 정신적 위기감, 신체적 불편감, 죄책감, 불안감, 사회적 고립감, 우울감, 절망감, 경제적 어려움 등으로서 환자의 회복시기, 즉 발병에서 입원까지 입원에서 퇴원 전까지, 퇴원 후부터 환자가 혼자 화장실을 사용하기 전까지, 환자가 혼자 화장실을 사용할 때부터 홀로서기 까지의 4시기에 따라 특이한 양상을 띄었으며 이들 시기별 경험은 각 시기에 따라 다르게 나타나는 돌보는 활동, 책무감, 회복양상으로 설명이 가능하였다.
환자가족의 경험과 관련된 변수로는 환자와 환자가족과의 관계, 경제상태, 성별, 대응전략이 있었는데 이들 변수와 이상의 경험으로 부터 5가지 가설이 도출되었다. 이 연구결과는 환자가족에 대한 깊은 이해와 더불어 효과적, 효율적 간호 중재를 위한 방향을 제시하므로 그 의의가 높다고 하겠다.
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. Maintaing 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 Au-gust, 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 occurence 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 hypothesses were evolved.
(1) The family caregivers who perceive that the patient´s recovery has not reached their expectation feel higher level of anxiety.
(2) Doughters-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, de-
pression, and hopelessness when the period of caregiving lasts longer.
(4) Family caregivers who are male and self-supportive receive higher family sup-
port and feel the caregiving experiences less negatively.
(5) Family caregiver who express their feelings out manage better than the family caregivers who repress their feelings inside.
This study offers better understanding on the caregiving experiences and may facilitate more appropriate interventive strategies to minimize the negative experiences. The nurses should utilize the results to provide the holistic forms of assistance and must continously develop nursing knowledge and skills accordingly.
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