• 대한간호학회지
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• 제22권4호
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• pp.636-652
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• 1992

This study identified the impact of childhood cancer on the Korean family. The purpose was to contribute knowledge for family nursing and pediatric hospice care practice with sick children and their families. This descriptive study was conducted during a 6 month period with children who were being treated for cancer at six university hospitals in Seoul. The data were gathered from members of 68 families ; 24(Group A), with a child newly diagnosed with cancer : 27(Group B), with a child under treatment and without complications, and 17 (Group C), with a child in relapse. Medical records, structured questionnaires and interviews were used for data collection. The questionnaires and interview schedules had been used previously in Martinson's research in the USA and China. The findings, conclusions, and suggestions are as follows. 1. The impact of childhood cancer on the family. Members of the family experienced fear, helplessness, guilty feelings, and anger at the time of the initial diagnosis and at relapse. Mothers complained of headache, anorexia and poor appetite, weight loss, sleep disturbance, and bad dreams. Many of the fathers either lost or changed jobs, and all working mothers stopped working. Half the parents reported changes in their marital relationships such as frequent quarrels but also stronger unity. Family members perceived cancer as the most frightening disease. Change in their world view was expressed as living on faith understanding suffering, determining to live a better life, wanting to live an upright life and valuing health as the most important. Religious activities are found most helpful through this difficult experience. Financial debt due to the treatment and care of the sick child, burdened 22 families. The above mentioned impact was most evidant in Group B(those presently undergoing treatment) and Group C(those in relapse). Findings indicate that nursing care should embrace the family of a child who is being treated for cancer. 2. Characteristics of the child with cancer The majority of the children in this sample had a diagnosis of leukemia. Their mean age was 6.8 and the ratio of boys to girls was 1.12 ; 1. The mean hospitalization frequency was 13.5 times and the mean duration of illness was 16.8 months. Most of 1.he children perceived cancer as the most frightening disease ; 32.7% of the children described their sickness as serious. Children in Group C were hospitalized more frequently, stayed in hospital for longer periods, and expressed their sickness as quite serious more often than the other two groups. These findings indicate how much comprehensive pediatric hospice nursing care services are needed along with relevant research and nursing education. 3. Characteristics of the families. The mean age of the father was 39.5 and the mother, 36,6 ; they are in their most productive life period. Mothers especially expressed feelings of financial uneasiness and powerlessness about giving up their jobs, and guilty feelings for not providing enough care and concern to other children due to taking care of the sick one. The burden of caring for the sick child can bring negative changes in family dynamics which they think provoke potential health problems in members of the family These findings suggest a need for nursing support and counselling resources. Findings also suggest the need for ethical inquiry about such questions as who should give information to the child in regard to diagnosis and prognosis, when, and how. Other suggestions included : 1) Quality health care for childhood cancer such as home care and pediatric hospice programs should be established. 2) Special and practical consideration for long-term patients should be made in the present insurance coverage. The reimbursement period for long-term patients should be lengthened. 3) Further in-depth qualitative studies are needed. 4) Education programs including guided practice experience for pediatric hospice care practitioners are needed.

• Journal of Hospice and Palliative Care
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• 제3권1호
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• pp.39-48
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• 2000

목적 : 본 연구는 호스피스 병동과 독립기관에 입원한 환자의 영적 요구를 알아보고자 실시하였다. 방법 : 대상자는 9개 기관에서 선정한 환자 49명과 보호자 40명이며, 자료수집 기간은 1999년 6월부터 8월까지였다. 결과 : 1) 일반적 특성에 따른 영적 요구는 환자의 경우 위암 환자 군, 여성 군, 대졸 이상군, 기독교군, 호스피스 간호기간 $8{\sim}14$일 군 및 신앙이 중요하다고 하는 군에서 유의하게 높았고, 보호자의 경우는 기타 종교를 가진 군, 투병기간 $3{\sim}5$년 미만인 군이 높았다. 2) 영적 요고, 전체 평균에서 환자가 $3.69{\pm}0.52$로 보호자 $4.06{\pm}0.42$보다 유의하게 낮았다. 영역별 순위는 환자가 삶의 의미와 희망영역에서, 보호자는 사랑과 관심영역에서 가장 높았고, 종교적 영역은 공통적으로 낮았다. 문항에서는 사랑과 관심영역에서 환자는 '부드럽게 말해주길 원한다'가, 보호자는 '슬프고 외로울 때 따뜻하게 질문에 대답해 주길 원한다'를 가장 많이 요구했고, 또한 환자는 '다른 환자보다 본인에게 신경 써 주길 원한다'와 보호자는 '환자는 부드럽게 말해주길 원한다'가 가장 요구가 낮았다. 종교적 영역의 문항 중 '모든 것에서 벗어나 마음이 평안해 질 수 있도록 도와주길 원한다'는 환자와 보호자 모두 요구가 높았으며, '신을 알 수 있는 책을 권유해 주길 원한다'가 가장 요구가 낮았다. 삶의 의미와 희망에 관한 영역의 문항 중 두 군 모두 '희망을 갖도록 해 주길 원한다'가 가장 많이 원했으며, '관계가 좋지 않은 사람과 화해할 수 있는 기회를 가지도록 배려해 주길 원한다'가 가장 낮았다. 결론 : 호스피스 환자의 영적 요구를 더 깊이 알고 이해하기 위해서는 개별적인 심층면담이 실시되어야 한다고 사료되며, 이를 통해 호스피스 팀은 환자가 원하는 영적 간호를 실시하도록 체계적인 접근 방법을 강구해야 할 것으로 사료된다.