基于白血病患儿生存质量分析的人文关怀路径探析
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摘要
根据儿童生存质量普适性核心量表(PedsQL4.0),对白血病患儿66例和正常儿童203例进行调查比较发现,白血病患儿在生理功能、角色功能、情感功能以及生存质量总评分上均显著低于正常儿童(P<0.01),阐述了白血病患儿生存质量的现状:生理功能严重受损、情感功能负向发展、社会交往能力退化、整体生存质量差。进而分析治疗中白血病患儿人文关怀缺失的原因:医疗人文服务欠缺、家庭整体功能弱化、社会化服务支持不足。针对此提出了白血病患儿人文关怀的路径:跨领域多元合作模式、家庭助力支持计划、环境营造与社会倡导等。
According to the Pediatric Quality of Life Inventory(PedsQL4.0), 66 children with leukemia and 203 normal children were investigated and compared. The results showed that the total scores of physiological functions, role functions, emotional functions and quality of life in children with leukemia were significantly lower than those in normal children(P<0.01). The present situation of the quality of life in children with leukemia was expounded, including severe impairment physiological functions, negative development of emotional functions, deterioration of social communication ability and poor overall quality of life. Then the study analyzed the reasons for the lack of humanistic care in the treatment of children with leukemia in: the lack of medical humanities services, the weakening of overall family functions and the lack of social service support. In response to this, the path of humanistic care for children with leukemia was put forward, including multi-field cooperation model, family support plan, environment creation and social advocacy.
According to the Pediatric Quality of Life Inventory(PedsQL4.0), 66 children with leukemia and 203 normal children were investigated and compared. The results showed that the total scores of physiological functions, role functions, emotional functions and quality of life in children with leukemia were significantly lower than those in normal children(P<0.01). The present situation of the quality of life in children with leukemia was expounded, including severe impairment physiological functions, negative development of emotional functions, deterioration of social communication ability and poor overall quality of life. Then the study analyzed the reasons for the lack of humanistic care in the treatment of children with leukemia in: the lack of medical humanities services, the weakening of overall family functions and the lack of social service support. In response to this, the path of humanistic care for children with leukemia was put forward, including multi-field cooperation model, family support plan, environment creation and social advocacy.
引文
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[13] 徐虹,傅丽丽,傅茜.儿科医务社工多元合作模式初探[J].中国社会工作,2015(6):16-17.
[14] 张帅,田大燕,徐敏.2013版《美国儿童临终关怀指南》解读及个人体会[J].检验医学与临床,2016,13(z2):387-389.
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[16] 石林,莫霖,何昀,等.白血病儿童生存质量影响因素及国内外研究进展[J].重庆医科大学学报,2015(11):1417-1422.
[17] Kupst MJ,Natta MB,Richardson CC,et al.Family coping with pediatric leukemia:ten years after treatment[J].J Pediatr Psychol,1995,20(5):601-617.
[18] 林晓霞,陈燕惠,陈珊,等.社会支持对学龄期白血病患儿及其家长的影响[J].中国儿童保健杂志,2016,24(12):1241-1244.
[2] Nayiager T,Anderson L,Cranston A,et al.Health-related quality of life in long-term survivors of acute lymphoblastic leukemia in childhood and adolescence[J].Quality of Life Research,2017,26(5):1371-1377.
[3] Lipscomb J,Reeve B B,Clauser S B,et al.Patient-Reported Outcomes Assessment in Cancer Trials:Taking Stock,Moving Forward[J].Journal of Clinical Oncology,2007,25(32):5133-5140.
[4] O'Mara A M,Denicoff A M.Health related quality of life in NCI-sponsored cancer treatment trials[J].Seminars in Oncology Nursing,2010,26(1):68-78.
[5] Stevanovic D,Lakic A,Damnjanovic M.Some psychometric properties of the pediatric quality of life inventory version 4.0 generic core scales(PedsQL) in the general Serbian population[J].Quality of Life Research,2011,20 (6):1123.
[6] 卢奕云,田琪,郝元涛,等.儿童生存质量测定量表PedsQL4.0中文版的信度和效度分析[J].中山大学学报(医学科学版),2008,29(3):328-331.
[7] 赵悦辰.白血病的发病机制与诊断现状[J].医药卫生:全文版,2016(10):139-139.
[8] 付红.心理学在儿科门诊输液中的应用[J].中华现代护理学杂志,2005,2(13):1213.
[9] 李义庭,刘芳.生命关怀的理论与实践[M].北京:首都师范大学出版社,2012:49-62.
[10] Martino M L,Freda M F,Camera F.Effects of Guided Written Disclosure Protocol on mood states and psychological symptoms among parents of off-therapy acute lymphoblastic leukemia children[J].2013,18(6):727-736.
[11] 廖玉玲.白血病儿童父母家庭功能和生存质量的相关性研究[J].当代护士,2013,9(8):4-6.
[12] 库少雄,林欢欢.白血病儿童社会工作介入策略研究[J].广东工业大学学报(社会科学版),2013(2):33-37.
[13] 徐虹,傅丽丽,傅茜.儿科医务社工多元合作模式初探[J].中国社会工作,2015(6):16-17.
[14] 张帅,田大燕,徐敏.2013版《美国儿童临终关怀指南》解读及个人体会[J].检验医学与临床,2016,13(z2):387-389.
[15] 王玲,肖延风,李金娜,等.论人文关怀在白血病患儿长期治疗中的作用[J].中国医学伦理学,2015,28(4):639-642.
[16] 石林,莫霖,何昀,等.白血病儿童生存质量影响因素及国内外研究进展[J].重庆医科大学学报,2015(11):1417-1422.
[17] Kupst MJ,Natta MB,Richardson CC,et al.Family coping with pediatric leukemia:ten years after treatment[J].J Pediatr Psychol,1995,20(5):601-617.
[18] 林晓霞,陈燕惠,陈珊,等.社会支持对学龄期白血病患儿及其家长的影响[J].中国儿童保健杂志,2016,24(12):1241-1244.