癌症儿童安宁疗护影响因素及对策研究进展

doi:10.3969/j.issn.1674-490X.2019.05.008

摘要/Abstract

摘要： 安宁疗护对减轻癌症儿童的痛苦、提高其生存质量具有重要的意义。阐述了安宁疗护的照护理念以及在癌症儿童群体中实施安宁疗护的必要性,指出了儿童对死亡的认知、照护者对死亡的认知、专业机构和人员配置、安宁疗护培训与应用以及政策及医疗服务的保障等是影响安宁疗护在癌症儿童群体中实施的阻碍因素。为促进癌症儿童安宁疗护事业的发展,应对儿童及照护者开展死亡教育、完善机构及人员配置、开展安宁疗护的培训,同时加强政策及制度的保障。

关键词: 安宁疗护, 儿童, 癌症, 死亡教育

Abstract: Hospice care is of great significance in alleviating the suffering of children with cancer and improving their quality of life. This article expounds the concept of hospice care, and the necessity of hospice care for children with cancer. It points out the children's cognition of death, caregiver's perception of death, professional institutions and staffing, training and application, and policies and so on are the obstacles to hospice care in children with cancer. In order to promote the development of hospice care in children with cancer, we should carry out the death education in children and caregivers, improve institutions and personnel allocation, expend training on hospice care, and strengthen its policies and systems.

Key words: hospice care, children, cancer, death education

中图分类号:

王霜霜,王鑫鑫,郭玉芳,徐月清,薛桂花. 癌症儿童安宁疗护影响因素及对策研究进展[J]. 医学研究与教育, 2019, 36(5): 45-51.

参考文献

[1] World Health Organization. WHO Definition of palliative care[EB/OL].(2012-12-21)[2019-08-04].http://www.who.int/cancer/palliative/definition/en.
[2] 北京医院.两会医声|北京医院杨杰孚教授:重视和完善对心衰、癌症等疾病终末期患者安宁疗护能力建设[EB/OL].(2019-03-07)[2019-08-04].http://www.sohu.com/a/299596591_386893.
[3] FADEL S A, BOSCHI-PINTO C, YU S C, et al. Trends in cause-specific mortality among children aged 5-14 years from 2005 to 2016 in India, China, Brazil, and Mexico: an analysis of nationally representative mortality studies[J]. Lancet, 2019, 393(10176): 1119-1127. DOI: 10.1016/s0140-6736(19)30220-x.
[4] AVOINE-BLONDIN J, PARENT V, FASSE L, et al. How do professionals assess the quality of life of children with advanced cancer receiving palliative care, and what are their recommendations for improvement?[J]. BMC Palliat Care, 2018, 17: 71-81. DOI: 10.1186/s12904-018-0328-y.
[5] SKLENAROVA H, KRÜMPELMANN A, HAUN M W, et al. When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors[J]. Cancer, 2015, 121(9): 1513-1519. DOI: 10.1002/cncr.29223.
[6] MARTINSON I M. Hospice care for children: past, present, and future[J].J Pediatr Oncol Nurs,1993,10(3):93-98. DOI: 10.1177/104345429301000304.
[7] AL LAMKI Z. Improving cancer care for children in the developing world: challenges and strategies[J]. Curr Pediatr Rev, 2017, 13(1): 13-23. DOI: 10.2174/1573396312666161230145417.
[8] LYNCH T, CONNOR S, CLARK D. Mapping levels of palliative care development: a global update[J]. J Pain Symptom Manag, 2013, 45(6): 1094-1106. DOI: 10.1016/j.jpainsymman.2012.05.011.
[9] HUTCHESON A. Hospice care in the United States[J]. Prim Care, 2011, 38(2): 173-182. DOI: 10.1016/j.pop.2011.03.002.
[10] 国仁秀, 陆宇晗. 1例胰腺癌终末期患者的安宁疗护实践[J]. 中华护理杂志, 2017, 52(6): 672-674.
[11] FOSTER T L, LAFOND D A, REGGIO C, et al. Pediatric palliative care in childhood cancer nursing: from diagnosis to cure or end of life[J]. Semin Oncol Nurs, 2010, 26(4): 205-221. DOI: 10.1016/j.soncn.2010.08.003.
[12] LIU Y Y, YUAN C R, WANG J C, et al. Comparability of the patient-reported outcomes measurement information system pediatric short form symptom measures across culture: examination between Chinese and American children with cancer[J]. Qual Life Res, 2016, 25(10): 2523-2533. DOI: 10.1007/s11136-016-1312-8.
[13] AZIZA Y D A, WANG S, HUANG M. Unmet supportive care needs and psychological distress among parents of children with cancer in Indonesia[J]. Psycho-Oncology, 2019, 28(1): 92-98. DOI: 10.1002/pon.4914.
[14] AIDOO E, RAJAPAKSE D. End of life care for infants, children and young people with life-limiting conditions: planning and management: the NICE guideline 2016[J]. Arch Dis Child Educ Pract Ed, 2018, 103(6): 296-299. DOI: 10.1136/archdischild-2017-312767.
[15] DUNBAR H, CARTER B, BROWN J. Coming ‘Home’: place bonding for parents accessing or considering hospice based respite[J]. Heal Place, 2019, 57: 101-106. DOI: 10.1016/j.healthplace.2019.03.004.
[16] KIRK S, PRITCHARD E. An exploration of parents' and young people's perspectives of hospice support[J]. Child: Care Heal Dev, 2012, 38(1): 32-40.DOI: 10.1111/j.1365-2214.2011.01232.x.
[17] KOO H Y, CHOI S H, PARK H R. Cognition and needs for hospice care among parents of children with cancer[J]. J Korean Acad Child Heal Nurs, 2009, 15(3): 325. DOI: 10.4094/jkachn.2009.15.3.325.
[18] ESKOLA K, BERGSTRAESSER E, ZIMMERMANN K, et al. Paediatric end-of-life care in the home care setting(PELICAN HOME): a mixed methods study protocol[J]. J Adv Nurs, 2015, 71(1): 204-213.DOI: 10.1111/jan.12463.
[19] 李丹, 陈秀娣. 儿童生命认知和生命体验的发展特点[J]. 心理发展与教育, 2009, 25(4): 1-7. DOI: 10.16187/j.cnki.issn1001-4918.2009.04.001.
[20] PANAGIOTAKI G, HOPKINS M, NOBES G, et al. Children's and adults' understanding of death: cognitive, parental, and experiential influences[J]. J Exp Child Psychol, 2018, 166: 96-115. DOI: 10.1016/j.jecp.2017.07.014.
[21] 于静, 朱莉琪, 孟月海. 幼儿与成人的死亡认知和来生信念[J]. 中国临床心理学杂志, 2010, 18(4): 517-519, 522.DOI: 10.16128/j.cnki.1005-3611.2010.04.030.
[22] KREICBERGS U, VALDIMARSD TTIR U, ONEL V E, et al. Talking about death with children who have severe malignant disease[J]. N Engl J Med, 2004, 351(12): 1175-1186. DOI: 10.1056/nejmoa040366.
[23] NING X H. Hospice and palliative care in mainland China: history, current status and challenges[J]. Chin Med Sci J, 2018, 33(4): 199-203.DOI: 10.24920/003524.
[24] 李永红, 王彦哲, 王章琴, 等. 医护人员的死亡态度调查与分析[J]. 重庆医学, 2014, 43(29): 3982-3983.
[25] 李鸿, 杨慧峰. 安宁疗护中社会志愿者对死亡教育的认知分析[J]. 全科护理, 2019, 17(1): 107-109.
[26] LINDLEY L C, MARK B A, DANIEL LEE S, et al. Factors associated with the provision of hospice care for children[J]. J Pain Symptom Manag, 2013, 45(4): 701-711. DOI: 10.1016/j.jpainsymman.2012.03.010.
[27] VARELA A M S, DEAL A M, HANSON L C, et al. Barriers to hospice for children as perceived by hospice organizations in North Carolina[J]. Am J Hosp Palliat Care, 2012, 29(3): 171-176. DOI: 10.1177/1049909111412580.
[28] CHONG P H, HAMSAH E, GOH C. Paediatric palliative care in the Asia Pacific region: where are we now?[J]. BMJ Support Palliat Care, 2017, 7(1): 17-22. DOI: 10.1136/bmjspcare-2014-000812.
[29] 王文超, 顾莺, 杨玉霞. 2016版NICE婴儿、儿童及青少年临终关怀的准备与管理指南要点解读[J]. 上海护理, 2019, 19(2): 1-4.
[30] TAYLOR J, ALDRIDGE J. Exploring the rewards and challenges of paediatric palliative care work-a qualitative study of a multi-disciplinary children's hospice care team[J]. BMC Palliat Care, 2017, 16: 73. DOI: 10.1186/s12904-017-0254-4.
[31] VESEL T, BEVERIDGE C. From fear to confidence: changing providers' attitudes about pediatric palliative and hospice care[J]. J Pain Symptom Manag, 2018, 56(2): 205-212. DOI: 10.1016/j.jpainsymman.2018.03.019.
[32] 段红英, 金晓燕, 沈丽琼, 等. 山西省25所三甲医院护士安宁疗护临床实践的调查分析[J]. 护理学杂志, 2018, 33(24): 8-10.
[33] PLUMMER K, MCCARTHY M, MCKENZIE I, et al. Pain assessment and management in paediatric oncology: a cross-sectional audit[J]. J Clin Nurs, 2017, 26(19/20): 2995-3006. DOI: 10.1111/jocn.13643.
[34] 王婷, 花芸, 涂红星, 等. 华中地区儿科护士疼痛管理知识及态度的现状调查[J]. 中华护理杂志, 2016, 51(6): 681-685.
[35] 刘华玉. 肿瘤科护士癌因性疲乏知信行调查研究[D]. 杭州: 浙江中医药大学, 2012:14-17.
[36] 陈银娟, 蓝静, 戴利, 等. 护士灵性照顾能力现状及其影响因素研究[J]. 护理学杂志, 2019, 34(6): 62-64.
[37] LINDLEY L C. The effect of pediatric palliative care policy on hospice utilization among California Medicaid beneficiaries[J]. J Pain Symptom Manag, 2016 52(5): 688-694. DOI: 10.1016/j.jpainsymman.2016.05.019.
[38] 申靓亮, 刘冰冰, 赵利梅, 等. 我国台湾安宁疗护的发展历程及启示[J]. 护理管理杂志, 2017, 17(3): 189-191.
[39] 郑丽君. 我国台湾成功大学医学院附设医院安宁病房的学习见闻及启示[J]. 护理研究, 2018, 32(19): 3137-3140.
[40] 周雪, 冯吉波. 医学人文视角下如何做好安宁疗护[J]. 医学与哲学, 2019, 40(4): 69-71.
[41] FERRELL B, BULLER H, PAICE J, et al. End-of-life nursing and education consortium communication curriculum for interdisciplinary palliative care teams[J]. J Palliat Med, 2019, 22(9): 1082-1091. DOI: 10.1089/jpm.2018.0645.
[42] 李雪, 彭青, 苏建萍, 等. 安宁疗护护士核心能力评价指标体系的构建[J]. 中国医药导报, 2019, 16(8): 161-164.