• Pediatric Gastroenterology, Hepatology & Nutrition
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• 제23권6호
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• pp.548-557
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• 2020

Purpose: To better understand the benefits and harms of engagement with online pediatric liver disease communities within social media. Methods: We conducted a survey of caregivers of children with liver disease participating in online pediatric liver disease communities within social media, as well as a survey of healthcare providers (e.g., physicians, surgeons, nurse coordinators) from this field to better understand the perceived benefits and harms of participation. Results: Among 138 caregivers of children with liver disease that completed the survey, 97.8% agreed social media was a good place to learn about patient experiences and 88% agreed it was a good source of general information. Among caregivers, 84.8% agreed social media helps them to better advocate for their child. While 18% agreed that the information over social media was equal to the information from their healthcare team and 19% neither agreed/disagreed, only 3% indicated they would use this information to change care without telling their provider; in contrast, among 217 healthcare providers, 55% believed social media may lead caregivers to change management without telling their team. Conclusion: Engagement with online disease-specific communities in social media yields several benefits for caregivers and, in contrast to healthcare providers' concerns, participation is unlikely to lead to problems including caregivers changing the treatment plan without first discussing these plans with their team. Openness between caregivers and medical teams about the role for social media can help to improve trust and maximize the potential benefits of engagement with these groups.

• 한국직업건강간호학회지
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• 제17권1호
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• pp.5-13
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• 2008

Purpose: The purpose of this study is to identify Activities of Daily Living(ADL) of industrial accident disabled with a caregiver and to evaluate the degree of satisfaction with services according to kinds of caregiver, professional or non-professional. Method: Data was collected from 178 patients in three workers' accident medical corporations of H, A and D cities from July to August, 2006. Five inspectors interviewed with the disabled by visiting the hospital. Collected data was analyzed for the frequency, percentages, t-test, etc. Results: The average score of ADL which ranged from 1 to 7 was 3.6. The 51.5 percent of caregivers for industrial accident disabled were non-professional and the 48.5 percent of caregivers were professional. 50.9 percent of the reason for the family caregivers was because of economical one. The caregiver satisfaction degree was 3.7 out of 4. The satisfaction degree with the professional caregivers was significantly higher than that with non-professional family caregivers for their excellent knowledge and techniques. Conclusion: A nursing expenses for the industrial accident disabled was intended to provide appropriate nursing services for the patient and so, it should not be a kind of income. So, the system for caring services should be investigated and the qualification of caregivers should be classified according to the health condition of the patient or ADL.

• Journal of Hospice and Palliative Care
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• 제9권2호
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• pp.106-111
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• 2006

목적: 말기 암환자에서 마약성 진통제를 사용한 통증 조절과 호스피스를 통한 보존적 치료는 매우 유용한 치료 방법이다. 그러나 많은 환자들과 환자의 보호자들은 중독과 내성에 대한 두려움 때문에 마약성 진통제의 사용을 충분히 하지 못하고 있다. 그리고 또한 다수의 환자와 보호자들은 호스피스가 환자의 상태가 돌이킬 수 없는 지속적으로 악화되는 것과 같이 생각하기 때문에 호스피스를 받아들이는 것을 꺼려한다. 이 연구의 목적은 한국 문화에서 가족구성원이 건강관리에 결정적인 역할을 하기 때문에 말기 암 환자의 보호자들의 호스피스와 마약성 진통제의 사용에 대한 인식도를 분석하고 평가하였다. 방법: 이 연구에서는 총 54명의 말기 암환자의 보호자들이 참가했다. 설문지는 총 마약성 진통제와 호스피스에 관한 15문항으로 구성되었다. 결과: 연구는 다음과 같은 결과를 나타내었다. 1) 환자보호자의 반 이상(56.7%)이 호스피스에 대한 인식이 없었다. 2) 환자 보호자의 81.8%가 호스피스 치료가 말기 암환자에게 유익하다는 데 동의했다. 3) 보호자의 85.1%는 경제적 부담을 갖고 있었다. 4) 환자의 83.2%가 24시간 동안 통증의 호소했다. 5) 보호자의 85.8% 마약성 진통제가 통증을 조절할 수 있음을 믿고 있었으나 또한 79.1%와 79.6%보호자들은 마약성 진통제의 사용이 중독과 내성을 발생시킨다고 믿었다. 결론: 여전히 통증 조절을 위한 마약성 진통제 사용에 있어 보호자의 벽이 존재했다. 또한 말기 암 환자 보호자에게 호스피스에 대한 정보가 부족했다. 그러므로 약사와 의사 의한 마약성 진통제에 대한 교육이 통한 말기암환자에 있어 적절한 통증 조절을 위해 필요하다. 그리고 호스피스에 대한 좀 더 정확한 정보를 말기 암 환자에게 제공하여야 한다.가족간병인의 삶의 질에 많은 영향을 주는 교정 가능한 인자로 나타났다. 말기 암 환자 간병인의 간병 시간 및 경제적 부담을 감축하기 위한 사회적 지원이 필요하다. 봉사자와의 관계는 매우 좋다가 81.2%로 대부분을 차지하였고, 병원직원과의 관계는 매우 좋다가 69.7%였고, 다음은 대체로 좋다가 21.2%의 순이었다. 봉사활동에 대해 가족이나 친구의 지지는 어떠한가는 매우 좋다가 83.2%로 대부분을 차지하였다. 2. 대상자의 자원봉사활동 만족도는 평점 $3.09{\pm}0.49$(도구범위 $1{\sim}4$점)로 중간정도이었다. 영역별로 살펴보았을 때 만족도가 가장 높았던 영역은 사회적 접촉영역($3.48{\pm}0.61$)이었고, 다음은 성취영역($3.43{\pm}0.53$), 사회적 인정영역($3.35{\pm}0.70$)의 순이었다. 만족도가 가장 낮았던 영역은 사회적 교환영역($1.65{\pm}0.63$)이었다. 3. 대상자의 인구사회학적 특성에 따른 봉사활동 만족도를 분석한 결과 성별(t=2.038, P=0.044), 결혼상태(F=3.806, P=0.013)에 따라 유의한 차이를 보였다. 4. 대상자의 자원봉사활동 실태에 따른 봉사활동 만족도를 분석한 결과병원봉사활동기간(F=3.326, P=0.008), 봉사활동을 하는 주된 이유(F=2.707, P=0.035), 봉사활동을 위한 교육을 받은 여부(t=-1.982, P=0.050), 봉사활동의 평가 빈도(F=7.877, P=0.000), 봉사활동이 자신의 기술이나 능력에 적합도(F=2.712, P=0.049), 관리자와의 관계(t=-2.517, P=0.013), 다른 병원직원과의

• Journal of Hospice and Palliative Care
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• 제18권4호
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• pp.314-321
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• 2015

목적: 말기암환자는 다양한 증상을 경험하기 때문에 말기 암이라는 상태는 환자뿐만 아니라, 그들의 가족 구성원들에게도 영향을 준다. 이 연구에서는 가족간병인의 삶의 질, 우울, 불안지수에 영향을 주는 환자의 증상조절과 같은 교정 가능한 요소들을 알아보고자 한다. 방법: 2015년 1월부터 2015년 5월말까지, 5개월 동안 부산광역시 내의 2개 대학병원 호스피스병동, 1개의 시립병원 호스피스병동에 입원한 61명의 가족간병인을 대상으로 설문조사를 시행하였다. 설문지는 가족간병인의 특성과 환자의 특성, 가족간병인의 CQOLC-K, BDI-II, BAI와 가족간병인이 수치화한 환자의 증상조절 점수로 구성되어 있다. 결과: 가족간병인의 우울지수는 종교와 연관성이 있으며, 삶의 질과 우울지수는 한달 가정소득에 영향을 받았다. 환자의 나이는 가족간병인의 삶의 질과 역의 상관관계를 가지고 있다. 가족간병인의 CQOLC-K는 환자의 불안조절 점수에 영향을 받았으며, 가족간병인의 BDI-II는 환자의 변비, 불안, 주간 졸음조절 점수에 영향을 받았다. 가족간병인의 BAI는 환자의 수면장애, 우울, 불안조절 점수에 영향을 받았다. 결론: 가족 간병인의 삶의 질, 우울, 불안지수는 환자의 증상이 잘 조절될 때 삶의 질이 높고, 우울, 불안지수가 낮은 경향을 보여주었다.

• 인간행동과 음악연구
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• 제14권1호
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• pp.17-39
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• 2017

본 연구에서는 국내 외에서 실시된 의료 환경 내 가족 보호자 대상 음악 중재 연구를 고찰하고 가족 보호자의 참여 유형에 따라 중재 목표, 음악 중재 내용 등이 어떻게 달라지는지 분석하였다. 본 연구를 위해 국내외 학술지 전자데이터베이스를 사용하여 음악 중재와 가족 보호자, 호스피스, 중환자, 소아병동, 재활 등의 세부 의료 환경 등을 검색어로 하여 2016년까지 게재된 논문을 검색하였다. 검색 과정을 통해 국내 연구 5편, 국외 연구 38편의 총 43편을 최종 선정, 분석하였다. 연구 분석 결과, 가족 보호자만 중재에 참여한 논문이 5편, 환자와 가족이 동반 참여한 논문이 38편이었다. 국외에서는 다양화된 형태의 가족 참여 연구가 1980년대 후반부터 시행된 반면, 국내에서는 가족 보호자만을 대상으로 하는 중재 연구는 미비하고 환자와 가족이 함께 참여하는 형태의 연구만 시행된 것으로 나타났다. 가족 단독 참여 연구는 주로 완화의료 병동에서 진행되었으며, 환자의 배우자가 참여하는 비율이 높았다. 가족 동반참여 연구는 신생아 중환자실, 암병동 등에서 실시되는 비중이 높고, 부모의 참여 비율이 가장 높았다. 가족 단독 참여 연구에서는 수동적인 음악 중재가 시행된 경우가 많은 반면, 환자와 보호자가 동반 참여한 연구에서는 적극적인 음악 중재가 사용되는 비중이 보다 많았다. 본 연구 결과는 의료 환경 내에서 중요하게 고려되고 있는 가족 중심 돌봄의 개념이 국내 의료 환경 내 음악 중재에 어떻게 적용될 수 있는지에 대한 기초 자료를 제시했다는 데 그 의의가 있다.

• Journal of Hospice and Palliative Care
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• 제23권1호
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• pp.27-38
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• 2020

Purpose: The purpose of this study was to compare differences in spiritual needs (SNs) and factors influencing SNs between patients with progressive terminal kidney disease and their family caregivers. Methods: An explorative comparative survey was used to identify the SNs of patients (N=102) with progressive terminal kidney disease undergoing hemodialysis and their family caregivers (N=88) at a general hospital located in Seoul, South Korea. The data were analyzed using descriptive statistics, the chi-square test, the independent t-test, one way analysis of variance, the Scheffe test, and multiple regression with dummy variables. Results: The SNs among family caregivers were higher than in the patient group. SNs were higher among those who were religious in both groups. Loving others was the highest-ranked subdimension in the patient group, followed in descending order by maintaining positive perspective, finding meaning, Reevaluating beliefs and life, asking "why?", receiving love and spiritual support, preparing for death, and relating to God. In the family group, the corresponding order was maintaining positive perspective, loving others, finding meaning, receiving love and spiritual support, preparing for death, relating to God, and asking "why?". The factors that had a negative influence on the level of SNs were not being religious in the patient group and having only a middle school level of education in the family group. Conclusion: The results of this study may serve as evidence that spiritual care for non-cancer patients' family caregivers should be considered as an important part of hospice and palliative care.

• 호스피스학술지
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• 제6권1호
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• pp.24-31
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• 2006

Psycho-social-spiritual care should be included with comprehensive nursing care of cancer patient. Because of human being have four dimensions as physical, psychological, social and spiritual dimension and they do interactional relationship with themselves, others and God. So caregivers of cancer patient have to recognize what they have psycho-social-spiritual needs and have to consider how caregivers can combine these in comprehensive nursing care. Cancer patient will be experienced shock, feeling of crisis and fear of death and will be showed denial, anger, bargaining, depression, accept or give-up, hope, spiritual distress and spiritual needs to which help them to do some rituals or interactions according their religion. Loving attitude is essential of cancer patient care especially of psycho-social-spiritual care. Dr. Kim and her some colleques investigated about this and find out 10 concepts(Caring Behaviors) by Graunded Theory Methodology. They are Noticing, Participating, Sharing, Active Listening, Complimenting, Companioning, Comforting, Hoping, Forgiving, Accepting.

• Asian Pacific Journal of Cancer Prevention
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• 제15권12호
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• pp.5063-5069
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• 2014

Background: Cancer is a disease which affects not only patients but also their families physically and emotionally. The purpose of this study was to determine the needs, challenges and ways of coping of caregivers of cancer patients. Materials and Methods: In the study, a phenomenological approach was used. Data were collected through semi-structured individual interviews. The study sample comprised 16 family members providing care for a cancer patient. Results: The study findings are grouped under four main themes: the impact of caregiving, masking feelings, experienced challenges and expectations, and coping. During the caregiving process, patient relatives are affected physiologically, psychologically and socially. It was determined that patient relatives hid their feelings and avoided talking about the disease for fear that they might upset the patient, and that they had difficulty in coping with the patient's reactions during the treatment process. Family members had difficulties arising from the health system, hospital conditions and treatment in addition to transportation and financial problems. Support is very important in coping, but it was determined that some of the relatives of patients did not receive adequate support. Patient relatives expect that health care professionals should provide them with more information about their patient's condition and the course of the disease that their patients should be dealt with by the physicians specialized in cancer, and that psychological support should be provided both for them and for their patient. Conclusions: During the caregiving process, family members are faced with many difficulties and they exhibit different coping behaviors which health care professionals should take into account.

• Asian Pacific Journal of Cancer Prevention
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• 제15권10호
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• pp.4181-4185
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• 2014

Background: The aim of this study was to describe the characteristics of male spouse caregivers of breast cancer patients in China, assess their quality of life (QOL), and investigate the influencing factors. Materials and Methods: A total of 243 breast cancer patient-spouse caregiver dyads were recruited from four hospitals in Shanxi and Anhui province of China. A cross-sectional design was applied to collect data and the Chinese version of the Medical Outcomes Study 36-item Short Form (SF-36) was used to measure caregivers' QOL, and the Chinese version of M.D. Anderson Symptom Inventory (MDASI-C) was applied to measure patient symptom severity and interference. Pearson's correlation was used to examine the correlations between caregiver burden and QOL. The multiple regression analysis was used to determine the most predictive factors influencing QOL. Results: The scores of all SF-36 scales were above 50.0, which were much lower than that of general mainland Chinese males. Mental QOL was significantly worse than physical QOL. Spouses demographic characteristics, caregiving-related variables and patient symptoms were related to spouse QOL. Caregiver burden has a negative relationship with QOL. Conclusions: A decrease in life events and patient symptoms, as well as increase in spouse sleeping time and family income, ought to improve QOL.

• 성인간호학회지
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• 제13권2호
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• pp.317-326
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• 2001

The purpose of this study was to identify correlation of stress, coping patterns and physical symptoms in cancer patient's caregiver. The stress was measured by VAS(Visual Analogue Scale). The coping methods were measured using the modified Ways of Coping Questionnaire by Yang (1998) and the actual physical symptoms were investigated. The phases of patient illness consisted of 1st (initial) stage, and 2nd (recurred) stage and 3rd (terminal) stage based on literature (Lewandowski & Jones, 1988). The data were collected by a survey conducted from March to July, 2000 and which included 196 cancer patients' caregivers from two hospitals in Seoul. The data were analyzed using paired t-test, unpaired t-test, ANOVA, Scheffe test and Pearson correlation coefficient. The results were as follows: 1. The average of caregivers' stress scores was 62.5. Problem-focused coping methods were significantly used more than emotion-focused coping methods by the cancer patients' caregiver. The mean number of caregivers' physical symptom was 1.03. 2. There were significantly high level of stress in women, those who were more than 60 years old, those who had a low education level, those who had no job, those who are patients' wives' and those who are terminal patients' caregiver. There were significantly low levels of coping in women, those who were more than 60 years old, those who had low education levels, those who had no job and those who are patients' wives. There were significantly higher number of physical symptoms in women, and those who have no job. 3. Caregivers' stress was significantly correlated to problem-focused coping methods (r=-.21, p=.006), and physical symptom (r=-.28, p=.0001). In conclusion, attempts to develop nursing interventions for cancer patients' caregiver in women, those who are more than 60 years old, with a low education level, have no job, and are cancer patients' wives could have an improvement on positive coping methods and provide relaxation from stress in the patients' experience.