• 호스피스학술지
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• 제6권2호
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• pp.1-9
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• 2006

In this thesis, Chapter I Introduction suggested the necessity of this research and defined related terms, and Chapter II defined hospice for children and examined the symptoms of pediatric cancers as well as the general characteristics of pediatric cancer patients. In particular, we surveyed the physical condition, psychological and emotional condition, financial condition, environmental aspect, educational aspect and spiritual aspect of pediatric cancer patients’ families, investigated pediatric cancer patients’ parents and siblings with regard to their understanding of the pediatric cancer patients’ death, and lastly considered spiritual care. Chapter III presented summaries and conclusions. In their developmental stage, pediatric cancer patients lack abilities to express themselves and are highly dependent on their parents, so parents who take care of cancer children have to make hard decisions and cancer children’s families are heavily burdened by the situation of preparing their children’s death and sending them away while denying their death, and for this reason they need help from specialists. That is, for pediatric cancer patients, we need highly experienced pediatricians or nurses skilful in managing young terminal patients as well as hospice counseling and family counselors for consulting on family crises. In particular, there is a keen need of child life support specialists. In addition, clergymen’s help is critical for spiritual care to ease the fear and terror of the unknown world, fear of death, etc. Moreover, in order to prevent cancer children from failing to adjust themselves to school life or peer relation after recovery, hospice service should provide cancer children with opportunities to learn school curriculums and associate with friends.

• 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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• 제18권3호
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• pp.235-244
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• 2015

목적: 본 연구는 아동병동 간호사들의 아동 호스피스 완화의료에 대한 인식과 지식을 알아보기 위해 수행되었다. 방법: 일개 대학병원의 어린이병원 내과계 병동과 중환자실에서 근무하는 간호사를 대상으로 인식 관련 23문항, 지식 관련 20문항으로 구성된 설문조사를 시행하고 총 132명의 자료를 분석하였다. 결과: 대상자의 아동 호스피스 완화의료에 대한 인식의 하위영역 중 '아동 호스피스 완화의료의 어려움'에 대한 인식이 가장 높았으며 특히 의사소통과 관련된 어려움을 크게 인식하고 있었다. 대상자의 일반적 특성이 아닌 아동 호스피스 완화의료 경험에 따라 인식의 차이를 보였다. 아동 호스피스 완화의료의 지식은 20점 만점에 $8.83{\pm}2.64$점으로 '통증과 증상관리', '철학과 원칙', '돌봄의 정신 사회적 측면'의 순으로 점수가 낮아졌다. 현재 근무지가 병동인 경우가 중환자실에 근무하는 경우보다 지식이 높은 것으로 나타났으며, 아동 호스피스 완화의료와 관련된 경험에 따른 지식의 차이는 보이지 않았다. 결론: 아동병동 간호사의 아동 호스피스 완화의료의 인식과 지식의 향상을 위해 간호사들이 어려움을 느끼는 부분과 부족한 지식을 보완할 수 있는 교육프로그램의 개발하여 아동병동 간호사들에게 지속적으로 제공하는 것이 필요하다.

• Journal of Hospice and Palliative Care
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• 제25권2호
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• pp.85-97
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• 2022

Purpose: This study aimed to describe nurses' perceived needs and barriers to pediatric palliative care (PPC). Methods: Mixed methods with an embedded design were applied. An online survey was conducted for nurses who participated in the End-of-Life Nursing Education Consortium- Pediatric Palliative Care (ELNEC-PPC) train-the-trainer program, of whom 63 responded. Quantitative data were collected with a survey questionnaire developed through the Delphi method. The 47 items for needs and 15 items for barriers to PPC were analyzed with descriptive statistics. Qualitative data were collected through open-ended questions and analyzed with topic modeling techniques. Results: The mean scores of most subdomains of the PPC needs were 3.5 or higher out of 4, and those of PPC barriers ranged from 3.22 to 3.56, indicating the items in the questionnaire developed in this study properly reflect each factor. The needs for PPC were divided into 4 categories: "children and adolescents," "families," "PPC management system," and "community-based PPC." Meanwhile, PPC barriers were divided into 3 categories: "healthcare delivery system," "healthcare provider," and "client." The keywords derived from the topic modeling were perception, palliative, children, and education for necessities and lack, perception, medical care, professional care providers, service, and system for barriers to PPC. Conclusion: In this study, by using mixed-methods, items of nurses' perceived needs and barriers to PPC were identified, categorized, and weighted, and their meanings were explored. For the stable establishment of PPC, the priority should be given to improving perceptions of PPC, establishing an appropriate system, and training professional care providers.

• Journal of Hospice and Palliative Care
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• 제17권4호
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• pp.289-300
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• 2014

목적: 본 연구는 말기아동 간호에 대한 교육자를 위한 교육프로그램인 ELNEC-PPC에 참여한 간호사의 소아청소년 호스피스완화의료(PPC)에 대한 지식 및 태도를 확인하기 위하여 수행되었다. 방법: 2012년 ELNEC-PPC 교육자를 위한 교육과정에 등록한 간호사 중 연구참여에 동의하고 서명날인 후 설문조사에 응답한 총 196명의 자료를 분석하였으며, 소아청소년 호스피스완화의료에 대한 지식과 태도는 20문항의 7점 척도로 측정하였다. 결과: 학력수준과 소아과병동 및 호스피스 근무경험에 따라 PPC에 대한 지식 정도에 차이가 있었다. 소아과 근무경험, PPC 경력 및 교육경험 이수 정도에 따라 소아 호스피스완화의료 태도에 차이가 있었으며, 기혼 간호사는 자녀의 완화의료서비스 결정에 대한 보호자의 권리에 대해 더 긍정적이었으며, 석사 이상군은 PPC에 대한 지식과 태도 정도가 높았다. 결론: PPC에 대한 간호사의 지식 및 태도를 높이기 위해서는 일반간호사를 대상으로 하여 표준화된 교육이 필요하다.

• Journal of Hospice and Palliative Care
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• 제20권3호
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• pp.167-172
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• 2017

말기 간경변은 간이식이 아니면 근본적 회복을 기대하기 어려운 질환으로, 환자와 가족의 장기간의 고통을 수반하기에 호스피스 완화의료적 접근에 대한 고려가 필요하며 이와 관련된 논의와 법규 정비가 이루어지고 있다. 말기 간경변에 따른 여러 증상은 다양한 중증도를 갖기에 그 대상자를 선별함에 주의가 필요하고, 일반적으로 Child-Pugh 분류상 C단계의 비대상성 환자들 중 적극 치료해도 호전되지 않는 간신증후군, 간성 뇌증 및 정맥류 출혈 환자로 한정하고 있다. 간이식이라는 완치적 치료법이 있는 점도 호스피스 완화의료적 접근 전에 충분히 환자 및 가족들과 상의 되어야 한다. 이러한 의학적 상태에 대한 판단은 때론 다변적이고 경계가 모호한 경우가 많아, 장기간의 진료와 평가를 기반으로 하는 것이 바람직하다. 따라서, 말기 간경변 환자에서 호스피스 완화치료 대상자의 선별은 전문 치료와 호스피스 완화치료 사이에 균형을 이루고 최선의 치료가 될 수 있도록, 간질환 전문가를 비롯한 여러 전문가들의 상호 협의와 다학제적 접근을 통해 이루어져야 한다. 본문에서는 호스피스 완화의료적 측면에서 말기 간경변이 갖는 특징과 고려해야 할 사항에 대해서 간략히 검토해 보고자 한다.

• Journal of Hospice and Palliative Care
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• 제23권4호
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• pp.212-227
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• 2020

Purpose: This study presents the process of designing workbooks for advance care planning appropriate for the Korean cultural setting and describes actual case studies. Methods: This study focused on single inductive case studies of the utilization of an advance care planning workbook and recruited individual participants. Results: The workbook for adolescents contained six sessions and the workbook for children contained seven sessions. The workbook sessions led to four major discoveries: 1) considering the Korean cultural context, discussions on life and death must be held indirectly; 2) the role of the counselor as a supporter is crucial for the workbook to be effective; 3) the workbook must be accessible regardless of the seriousness of the illness; and 4) patients must be able to make their own choice between the workbook versions for children and adolescents. Six facilitating factors improved engagement: 1) the role of the counselor as a supporter; 2) building trust with the patient; 3) affirming freedom of expression on topics the patient wished to avoid talking about; 4) having discussions on what private information to keep secret and to whom the information can be disclosed; 5) discovering and regularly discussing relevant topics; and 6) regular communication and information-sharing with the patient's medical service providers. Conclusion: It is necessary to build on actual case studies regarding workbooks for children and adolescents in order to expand the usage of these workbooks to all relevant medical institutions in Korea.

• Child Health Nursing Research
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• 제13권4호
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• pp.495-505
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• 2007

Purpose: The purpose of this paper was to develop a CD program of applied logotherapy to improve the quality of life of adolescents with terminal cancer. Method: Keller's ARCS theory and a model for developing internet learning materials(Kang) was applied to develop this program comprised four distinct phases: planning, designing, development, and execution stages. Results: This program was entitled 'Finding treasures in my life' and consisted of 5 sessions and its educational contents were made up as follows: "Treasure One" is 'learning three natures of the human mind', "Treasure Two" is 'learning creative value as first method to find meaning of life', "Treasure Three" is 'learning experiential value as second method to find meaning of life', "Treasure Four" is 'learning attitudinal value as third method to find meaning of life', and "Treasure Five" is 'Becoming the master of my life'. The sub-menu was made up of 'Beginning', 'What is it?', 'Travelling'. 'Laughing Song', 'End'. Conclusions: This CD program applied logotherapy with flash animation technique as an emotional and spiritual nursing intervention program for easier and more scientific application in pediatric oncology and hospice area.

• Journal of Hospice and Palliative Care
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• 제18권2호
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• pp.148-155
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• 2015

목적: 본 연구의 목적은 소아암 등의 난치병 환자들의 소원성취 프로그램에 대한 만족도가 질병 적응에 미치는 영향에서 레질리언스와 질병 스트레스가 갖는 매개효과를 파악하는데 목적이 있다. 방법: 한국메이크어위시재단에서 2010년부터 2014년까지 5년간 소원을 이루었던 1,597명의 환아 중 문장해독과 기억유지가 가능한 666명의 10대 이상에 해당하는 환아들에게 2015년 1월 2일에 모바일 설문지를 발송하였다. 그 결과 357명이 응답을 하였으나 성실하게 응답한 292명의 자료를 분석하였다. 결과: 소아 난치병 환아들이 소원성취 프로그램에 대해서 갖는 만족도는 레질리언스에 긍정적인 영향을 미치는 것으로 나타났다. 레질리언스는 질병 스트레스에 부정적인 영향을 미치고 질병 적응에는 긍정적인 영향을 미쳤으며, 질병 스트레스는 질병 적응에 부정적인 영향을 미치는 것으로 나타났다. 결론: 본 연구결과를 볼 때 소아 난치병 환자를 위한 소원성취 프로그램에 대한 만족도는 레질리언스의 향상과 질병 스트레스의 감소를 통하여 궁극적으로 이들의 질병에 대한 적응력을 높이는 효과가 있다는 것을 알 수 있다. 따라서 소아 난치병 환자들의 욕구와 특성을 면밀히 분석하여 소원성취 프로그램을 실행하고 만족도를 높이면 이들이 질병에 대해서 보다 적극적으로 대처할 수 있는 동시에 현재의 삶을 긍정적으로 영위할 수 있는 동기를 제공할 수 있을 것이다.

• 가족자원경영과 정책
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• 제10권4호
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• pp.145-161
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• 2006

This research paper represents family volunteer management system for the purpose of activating family volunteer activities. This family volunteer management system is based on the family volunteer activity cases by healthy family support center in Cheon-An City. The following data is the evaluation of effectiveness in the family volunteer management system. 9 families (32 people) among family volunteers who are participated in activities worked for twelve to eighteen hours per a month; one to six times per a month; at the more than two different social welfare facilities. They volunteered in the areas of cultural experience programs for the immigrant's families, baby cares, help for the handicaps and hospice. Family volunteers showed high satisfaction levels; average 4.37 out of 5; in the Family volunteer's management system. They checked in the area of volunteer's training, activity period, activity places, teamwork, healthy family support center, and supervisor of volunteer center.