儿童姑息照护影响因素及管理实践的研究进展

doi:10.3761/j.issn.0254-1769.2021.04.024

摘要/Abstract

摘要：

儿童姑息照护（pediatric palliative care,PPC）可以减轻患儿痛苦、改善患儿生活质量,已成为生命限制性疾病患儿的照护标准。该文通过综述PPC的内涵及其影响因素,总结国内外PPC的管理实践,提出促进中国PPC发展的策略,旨在为PPC的发展提供参考。

关键词: 姑息照护, 临终关怀, 影响因素分析, 综述, 儿科护理学

Abstract:

Pediatric palliative care（PPC） has become the standard of care for children with life-limiting illness. The article summarizes the connotation of PPC and its main influencing factors,domestic and foreign management practices,aiming to provide references for the development of PPC in China.

Key words: Palliative Care, Hospice Care, Root Cause Analysis, Review, Pediatric Nursing

董诗奇,王娟,杜若飞,唐涵,郜心怡,陈怡杨,温华,陈长英. 儿童姑息照护影响因素及管理实践的研究进展[J]. 中华护理杂志, 2021, 56(4): 618-622.

DONG Shiqi,WANG Juan,DU Ruofei,TANG Han,GAO Xinyi,CHEN Yiyang,WEN Hua,CHEN Changying. Research progress on influencing factors and management practice of pediatric palliative care[J]. Chinese Journal of Nursing, 2021, 56(4): 618-622.

参考文献 39

[1]	Passone CGB, Grisi SJ, Farhat SC, et al. Complexity of pediatric chronic disease:cross-sectional study with 16,237 patients followed by multiple medical specialties[J]. Rev Paul Pediatr, 2020,38:e2018101. URL PMID
[2]	Jankovic M, de Zen L, Pellegatta F, et al. A consensus conference report on defining the eligibility criteria for pediatric palliative care in Italy[J]. Ital J Pediatr, 2019,45:89. URL PMID
[3]	戴丹, 李蕊, 查震球, 等. 安徽省肿瘤登记地区2014年儿童肿瘤发病与死亡情况分析[J]. 中国儿童保健杂志, 2019,27(4):447-450.
	Dai D, Li R, Zha ZQ, et al. Report of childhood cancer incidence and mortality from Anhui registries in 2014[J]. Chin J Child Heal Care, 2019,27(4):447-450.
[4]	Dangel T, Kmieć T, Januszaniec A, et al. Palliative care in 9 children with neurodegeneration with brain iron accumulation[J]. Neurol Sci, 2020,41(3):653-660.
[5]	WHO. WHO definition of palliative care[EB/OL]. （2018-01-27）[2020-03-09]. http://www.who.int/cancer/palliative/definition/en/.
[6]	Pelant D, McCaffrey T, Beckel J. Development and implementation of a pediatric palliative care program[J]. J Pediatr Nurs, 2012,27(4):394-401.
[7]	Naufel LZ, Sarno MTCD, Alves MAJ. Physicians’ knowledge about patients’ religious beliefs in pediatric care[J]. Rev Paul Pediatr, 2019,37(4):479-485.
[8]	Clercq ED, Rost M, Rakic M, et al. The conceptual understanding of pediatric palliative care:a Swiss healthcare perspective[J]. BMC Palliative Care, 2019,18(1):55.
[9]	Marsac ML, Kindler C, Weiss D, et al. Let’s talk about it:supporting family communication during end-of-life care of pediatric patients[J]. J Palliat Med, 2018,21(6):862-878.
[10]	Hill DL, Walter JK, Szymczak JE, et al. Seven types of uncertainty when clinicians care for pediatric patients with advanced cancer[J]. J Pain Symptom Manag, 2020,59(1):86-94.
[11]	Dreesens D, Veul L, Westermann J, et al. The clinical practice guideline palliative care for children and other strategies to enhance shared decision-making in pediatric palliative care;pediatricians’ critical reflections[J]. BMC Pediatr, 2019,19:467.
[12]	Szymczak JE, Schall T, Hill DL, et al. Pediatric oncology providers’ perceptions of a palliative care service:the influence of emotional esteem and emotional labor[J]. J Pain Symptom Manag, 2018,55(5):1260-1268. DOI URL
[13]	Hill DL, Nathanson PG, Fenderson RM, et al. Parental concordance regarding problems and hopes for seriously ill children:a two-year cohort study[J]. J Pain Symptom Manage, 2017,53(5):911-918. DOI URL PMID
[14]	Levine DR, Mandrell BN, Sykes A, et al. Patients’ and parents’ needs,attitudes,and perceptions about early palliative care integration in pediatric oncology[J]. JAMA Oncol, 2017,3(9):1214.
[15]	Shaulov A, Baddarni K, Cherny N, et al. “Death is inevitable- a bad death is not”report from an international workshop[J]. Israel J Heal Policy Res, 2019,8(1):1-8.
[16]	Knapp C, Woodworth L, Wright M, et al. Pediatric palliative care provision around the world:a systematic review[J]. Pediatr Blood Cancer, 2011,57(3):361-368.
[17]	Lindley LC, Edwards SL. Geographic variation in California pediatric hospice care for children and adolescents:2007-2010[J]. Am J Hosp Palliat Care, 2018,35(1):15-20. DOI URL PMID
[18]	Lotstein DS, Lindley LC. Improving home hospice and palliative care policies[J]. Pediatrics, 2019,144(2):e20183287. URL PMID
[19]	Lindley LC, Cohrs AC, Keim-Malpass J, et al. Children enrolled in hospice care under commercial insurance:a comparison of different age groups[J]. Am J Hosp Palliat Care, 2019,36(2):123-129.
[20]	Helen Douglas House. Helen douglas house hospice care for children[EB/OL]. （2020-03-01）[2020-05-11]. https://www.helenanddouglas.org.uk.
[21]	Morrison RS. A national palliative care strategy for Canada[J]. J Palliat Med, 2018,21(S1):63-75.
[22]	Weaver MS, Rosenberg AR, Tager J, et al. A summary of pediatric palliative care team structure and services as reported by centers caring for children with cancer[J]. J Palliat Med, 2018,21(4):452-462. DOI URL PMID
[23]	Drake R. Palliative care for children in hospital:essential roles[J]. Children, 2018,5(2):26.
[24]	Brock K, Wolfe J, Ullrich C. From the child’s word to clinical intervention:novel,new,and innovative approaches to symptoms in pediatric palliative care[J]. Children, 2018,5(4):45.
[25]	Donohue PK, Williams EP, Wright-Sexton L, et al. “it’s relentless”:providers’ experience of pediatric chronic critical illness[J]. J Palliat Med, 2018,21(7):940-946.
[26]	向仕婷, 林国嬿, 李逊, 等. 儿童舒缓治疗的意义和发展现状[J]. 中国当代儿科杂志, 2020,22(6):662-666.
	Xiang ST, Lin GY, Li X, et al. Significance and current development status of pediatric palliative care[J]. Chin J Contemp Pediatr, 2020,22(6):662-666.
[27]	叶建亚, 张学茹, 王绮, 等. 我国儿童安宁疗护的机遇与挑战[J]. 医学与哲学, 2019,40(14):31-33.
	Ye JY, Zhang XR, Wang Q, et al. Opportunities and challenges of children’s palliative care in China[J]. Med Philos, 2019,40(14):31-33.
[28]	Slater PJ, Herbert AR, Baggio S, et al. Evaluating the impact of national education in pediatric palliative care:the quality of care collaborative Australia[J]. Adv Med Educ Pract, 2018,9:927-941. DOI URL PMID
[29]	Muckaden M, Ghoshal A, Talawadekar P, et al. Impact of educational training in improving skills,practice,attitude,and knowledge of healthcare workers in pediatric palliative care:children’s palliative care project in the Indian state of Maharashtra[J]. Indian J Palliat Care, 2018,24(4):411. DOI URL PMID
[30]	Weaver M, Wichman C. Implementation of a competency-based,interdisciplinary pediatric palliative care curriculum using content and format preferred by pediatric residents[J]. Children, 2018,5(12):156.
[31]	Weekly T, Walker N, Beck J, et al. A review of apps for calming,relaxation,and mindfulness interventions for pediatric palliative care patients[J]. Children, 2018,5(2):16.
[32]	Thrane SE, Maurer SH, Ren DX, et al. Reiki therapy for symptom management in children receiving palliative care:a pilot study[J]. Am J Hosp Palliat Care, 2017,34(4):373-379.
[33]	Koch K, Jones B. Supporting parent caregivers of children with life-limiting illness[J]. Children, 2018,5(7):85.
[34]	马华, 曹秀平, 李力威, 等. 俄罗斯儿童姑息治疗现状研究[J]. 中国医学伦理学, 2019,32(9):1160-1165.
	Ma H, Cao XP, Li LW, et al. Study on the current status of palliative care for children in Russia[J]. Chin Med Ethics, 2019,32(9):1160-1165.
[35]	Cheng BT, Rost M, de Clercq E, et al. Palliative care initiation in pediatric oncology patients:a systematic review[J]. Cancer Med, 2019,8(1):3-12.
[36]	付熙, 廖小利, 杨佳. 晚期慢性阻塞性肺疾病患者姑息照护的研究进展[J]. 中华护理杂志, 2020,55(9):1426-1431.
	Fu X, Liao XL, Yang J. Research progress on hospice care of patients with terminal chronic obstructive pulmonary disease[J]. Chin J Nurs, 2020,55(9):1426-1431.
[37]	Bogetz JF, Root MC, Purser L, et al. Comparing health care provider-perceived barriers to pediatric palliative care fifteen years ago and today[J]. J Palliat Med, 2019,22(2):145-151. DOI URL PMID
[38]	张艳, 刘延锦, 赵敬, 等. 美国《本科护理专业学生照护重病患者及其家庭的能力要求及培养建议》的介绍及启示[J]. 中华护理杂志, 2018,53(S1):116-119.
	Zhang Y, Liu YJ, Zhao J, et al. The introduction and enlightenment of competencies and recommendations for educating undergraduate nursing students preparing nurses to care for the seriously ill patients and their families[J]. Chin J Nurs, 2018,53(S1):116-119.
[39]	柳晓, 陆萍静, 王婷, 等. 生命限制性疾病儿童姑息护理的研究进展[J]. 解放军护理杂志, 2016,33(13):41-43.
	Liu X, Lu PJ, Wang T, et al. Research progress on pediatric palliative care with life limiting illness[J]. Nurs J Chin PLA, 2016,33(13):41-43.