摘要： 目的 通过对儿童安宁疗护的应用研究进展进行综述,以供国内临床实践参考。方法 检索国内外相关文献,从儿童安宁疗护概念、儿童安宁疗护国内外开展现状及临床应用等方面进行总结归纳。结果 发现儿童安宁疗护临床应用主要包含心理管理、疼痛管理、其它症状管理、家庭支持管理4个方面,并根据其干预措施中的不足,提出要开展专科化儿童安宁疗护及多种安宁疗护模式相结合的建议。结论 随着大数据时代到来,我国要借鉴发达国家在安宁疗护政策法律及模式创新方面的经验,制定适合我国儿童安宁疗护症状管理等的干预策略,探索适合我国最佳的多样化及跨学科相结合的儿童安宁疗护模式。
中图分类号:
- R48
| [1] Kantarjian HM, Keating MJ, Freireich EJ.Toward the Potential Cure Of Leukemias in the Next Decade[J]. Cancer,2018,124(22):4301-4313. DOI:10.1002/cncr.31669. [2] Rodriguez-Galindo C, Friedrich P, Morrissey L, et al.Global Challenges in Pediatric Oncology[J]. Curr Opin Pediatr,2013,25(1):3-15.DOI:10.1097/MOP.0b013e32835c1cbe. [3] 中共中央国务院. “健康中国2030”规划纲要[DB/OL].(2016-10-25)[2021-06-01].http://www.gov.cn/zhengce/2016-10/25/content_5124174.htm [4] Tan X, Liu X, Shao H.Healthy China 2030: A Vision for Health Care[J].Value Health Reg Issues,2017,12:112-114.DOI:10.1016/j.vhri.2017.04.001. [5] 张娜,唐倩,朱丽辉,等.新生儿安宁疗护的研究进展[J].护理学杂志,2021,36(18):102-105. [6] Hinds PS, Drew D, Oakes LL,et al.End-of-life Care Preferences of Pediatric Patients with Cancer[J]. J Clin Oncol,2005,23(36):9146-9154.DOI:10.1200/JCO.2005.10.538. [7] 李义庭,李伟,刘芳,等.临终关怀学[M].北京:中国科学技术出版社,2015:28. [8] Knapp C,Madden V,Fowle-Kerry S.Pediatric Palliative Care:Global Perspectives[M]. New York:Spriger Publishing Company,2012:5-8. [9] Amery JE.Children's Palliative Care in Africa[M].New York:Oxford University Press,2009. [10] Knapp С, Madden V, Fowler-Kerry S.Pediatrie Pallia-tive Care: Global Perspeetives[M]. New York: Springer Publishing Company,2012:5-8. [11] Prycer, Deborah HR. 3 127-PediatricPalliativeCareAct of2003[EB/OL].[2020-05-3l].https://www.congress.gov/bill108th-congress/house-bill/3127q=%7B%22search%0220o3A%o5B0o22the+palliative+care+and-hospice+educa-tion+and-training+act%o22%5D%7D&s=l&r=91.s [12] National Guideline Alliance(UK).End of Life Care for Infants, Children and Young People with Life-limiting Conditions: Planning and Management[M]. London: National Institute for Health and Care Excellence (NICE),2019. [13] 陆马,段欣毅.蝴蝶之家,让孩子有尊严地离去[J].文苑,2012,21(4):16-17. [14] Stayer D.Pediatric Palliative Care: A Conceptual Analysis For Pediatric Nursing Pratice[J]. J Pediatr Nurs, 2012,27(4):350-356.DOI:10.1016/j.pedn.2011.04.031. [15] 张颖.重症患儿舒缓治疗期待“破冰”[N].福建日报,2016-04-26(5). [16] Canadian Hospice Palliative Care Association. Pediatric Hospice Palliative Care: Guiding Principles and Norms of Practice[EB/OL].(2006-03-10)[2018-11-08].https:www.chpca.net/. [17] 国家卫生计生委办公厅.关于印发安宁疗护实践指南(试行)的通知[EB/OL].[2020-12-04]. https://ww.nhc.gov.cn/emssearch/xgk/geManuscripXxgk.hm?id837026194781-1581b7-6666b717. [18] Lindley LC, Slayter EM.Serious Illness and End-of-Life Quality for US Foster Children: A National Study[J]. Am J Hosp Palliat Care, 2018, 35(12):1505-1511.DOI:10.1177/1049909118782986. [19] Barker MM, Beresford B, Bland M, et al.Prevalence and Incidence of Anxiety and Depression Among Children, Adolescents, and Young Adults with Life-limiting Conditions: A Systematic Review and Meta-analysis[J]. JAMA Pediatr,2019,173(9):835-844. DOI:10.1001/jamapediatrics.2019.1712. [20] Collins JJ, Devine TD, Dick GS,et al.The Measurement of Symptoms in Young Children With Cancer: The Validation of the Memorial Symptom Assessment Scale in Children Aged 7-12[J]. J Pain Symptom Manage,2002,23(1):10-16. DOI:10.1016/s0885-3924(01)00375-x. [21] Akard TF, Gilmer MJ, Friedman DL, et al.From Qualitative Work to Intervention Development in Pediatric Oncology Palliative Care Research[J]. J Pediatr Oncol Nurs,2013,30(3):153-160.DOI:10.1177/1043454213487434. [22] Morken IS, Dahlgren A, Lunde I, et al.The Effects of Interventions Preventing Self-harm and Suicide in Children and Adolescents: An Overview of Systematic Reviews[J]. F1000Res,2019,8:890.DOI:10.12688/f1000research.19506.2. [23] Serretti A.Genetics and Pharmacogenetics of Mood Disorders[J]. Psychiatr Pol,2017,51(2):197-203. DOI:10.12740/PP/68914. [24] 王慧萍,陈京立.8例PICU患儿终末期护理引发的问题及思考[J].护理学报,2017,24(8):30-32.DOI:10.16460/j.issn1008-9969.2017.08.030. [25] Hauer J, Houtrow AJ, Section on Hospice And Palliative Medicine, et al. Pain Assessment and Treatment in Children With Significant Impairment of the Central Nervous System[J]. Pediatrics, 2017,139(6):e20171002. DOI:10.1542/peds.2017-1002. [26] Tiozzo E, Fondi S, Biagioli V, et al.Electronic Assessment and Tracking of Pain at Home: A Prospective Study in Children with Hematologic or Solid Tumors[J]. J Pediatr Oncol Nurs, 2021,38(2):82-93.DOI:10.1177/1043454220975443. [27] Mariyana R, Allenidekania A, Nurhaeni N.Parents' Voice in Managing the Pain of Children with Cancer during Palliative Care[J]. Indian J Palliat Care,2018,24(2):156-161.DOI:10.4103/IJPC.IJPC_198_17. [28] Lindley LC, Keim-Malpass J.Quality of Paediatric Hospice Care for Children with and without Multiple Complex Chronic Conditions[J]. Int J Palliat Nurs,2017,23(5):230-237. DOI:10.12968/ijpn.2017.23.5.230. [29] Jong MC, Boers I, van Wietmarschen H, et al. Development of an Evidence-based Decision Aid on Complementary and Alternative Medicine (Cam) and Pain for Parents of Children with Cancer[J]. Support Care Cancer, 2020, 28(5):2415-2429. DOI:10.1007/s00520-019-05058-8. [30] Anderson BJ.Goodbye to Needles.Arch Dis Child[J]. 2013,98(9):718-719. DOI:10.1136/archdischild-2013-304465. [31] Vollenbroich R, Borasio GD, Duroux A, et al.Listening to Parents: The Role of Symptom Perception in Pediatric Pallia Tive Home Care[J]. Palliat Support Care,2016,14(1): 13-19.DOI:10.1017/S1478951515000462. [32] Pritchard M, Burghen E, Srivastava DK, et al.Cancer-related Symptoms Most Concerning to Parents during the Last Week and Last Day of Their Child's Life[J].Pediatrics,2008,121(5):e1301-e1309.DOI:10.1542/peds.2007-2681. [33] Hendricks-Ferguson V.Physical Symptoms of Children Receiving Pediatric Hospice Care at Home during the Last Week of Life[J].Oncol Nurs Forum,2008,35(6):E108-E115.DOI:10.1188/08.onf.e108-e115. [34] Lynne P .End of Life Care for Infants, Children and Young People with Life-limiting Conditions[J]. Nursing Standard (Royal College of Nursing (Great Britain 1987), 2019, 31(23):15. [35] Markman JD, Philip A.Interventional Approaches to Pain Management[J]. Med Clin North Am,2007,91(2):271-286. DOI:10.1016/j.mcna.2006.10.015. [36] Beecham E, Candy B, Howard R, et al. Pharmacological Interventions for Pain in Children and Adolescents with Life-limiting Conditions[J]. Cochrane Database Syst Rev,2015(3):CD010750. DOI:10.1002/14651858.CD010750. [37] Arora MK, Baidya DK.WHO Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illness[J]. Indian J Med Res, 2013, 138(4):570-571. [38] Ellis K, Lindley LC.A Virtual Children's Hospice in Response to COVID-19: The Scottish Experience[J]. J Pain Symptom Manage,2020, 60(2):e40-e43.DOI:10.1016/j.jpainsymman.2020.05.011. [39] Weaver MS, Shostrom VK, Neumann ML, et al.Homestead Together: Pediatric Palliative Care Telehealth Support for Rural Children with Cancer During Home-based End-of-life Care[J]. Pediatr Blood Cancer,2021,68(4):e28921.DOI:10.1002/pbc.28921. [40] Ward A, Arola N, Bohnert A, et al.Social-emotional Adjustment and Pet Ownership among Adolescents with Autism Spectrum Disorder[J]. J Commun Disord,2017,65:35-42. DOI:10.1016/j.jcomdis.2017.01.002. [41] Craig F, Henderson EM, Bluebond-Langner M.Management of Respiratory Symptoms in Paediatric Palliative Care[J]. Curr Opin Support Palliat Care, 2015, 9(3):217-226. DOI:10.1097/SPC.0000000000000154. [42] Steele R, Siden H, Cadell S, et al.Charting the Territory: Symptoms and Functional Assessment in Children with Progressive, Non-curable Conditions[J]. Arch Dis Child,2014, 99(8):754-762. DOI:10.1136/archdischild-2013-305246. [43] Furtado RA, Tonial CT, Costa CAD, et al.End-of-life Practices in Patients Admitted to Pediatric Intensive Care Units in Brazil: A Retrospective Study[J]. J Pediatr (Rio J),2021,97(5):525-530. DOI:10.1016/j.jped.2020.10.017. [44] Braam W, Didden R, Smits M,et al.Melatonin Treatment in Individuals with Intellectual Disability and Chronic Insomnia: A Randomized Placebo-controlled Study[J]. J Intellect Disabil Res,2008,52(Pt 3):256-264. DOI:10.1111/j.1365-2788.2007.01016.x. [45] Allen NM, Lin JP, Lynch T, et al.Status Dystonicus: A Practice Guide. Dev Med Child Neurol[J].2014,56(2):105-112. DOI:10.1111/dmcn.12339. [46] Patel AK, Bell MJ, Traube C.Delirium in Pediatric Critical Care[J]. Pediatr Clin North Am,2017, 64(5):1117-1132. DOI:10.1016/j.pcl.2017.06.009. [47] 陈羽双,杨斯钰,张叶霞.2010-2019年基于PubMed数据库家庭参与式护理研究热点的共词聚类分析[J].护理学报,2021,28(9):14-18.DOI:10.16460/j.issn1008-9969.2021.09.014. [48] Dunkley S, Sales R.The Challenges of Providing Palliative Care for People with Intellectual Disabilities: A Literature Review[J]. Int J Palliat Nurs,2014,20(6):279-284.DOI:10.12968/ijpn.2014.20.6.279. [49] Kaye EC, Rubenstein J, Levine D, et al.Pediatric Palliative Care in the Community[J]. CA Cancer J Clin,2015,65(4):316-333.DOI:10.3322/caac.21280. [50] Bergstraesser E, Hain RD, Pereira JL.The Development of an Instrument That Can Identify Children with Palliative Care Needs: The Paediatric Palliative Screening Scale (Papas Scale): A Qualitative Study Approach[J].BMC Palliat Care,2013,12(1):20. DOI:10.1186/1472-684X-12-20. [51] 何月月,黄秀美,尹安春,等.ICU护士临终关怀态度现状及影响因素研究[J].护理学报,2019, 26(11):5-8.DOI:10.16460/j.issn1008-9969.2019.11.005. |
| [1] | 杜易梅, 刘莉, 郭立丽, 卢吉, 付苗苗, 刘杰. 妇科恶性肿瘤患者性健康研究进展[J]. 护理学报, 2025, 32(4): 28-33. |
| [2] | 李垚, 陈小敏, 夏敏, 吴茜, 张琳, 陈叡喆, 葛莉丽, 吴逸梅. 肿瘤患者衰弱评估工具应用的范围综述[J]. 护理学报, 2025, 32(4): 48-52. |
| [3] | 王小叶, 安俊红, 刘倩, 任琴, 高瑞琴, 范丽红. 共享决策在糖尿病足患者中应用的研究进展[J]. 护理学报, 2025, 32(3): 32-37. |
| [4] | 焦雪萍, 王志稳, 韩舒羽. ICU老年患者躁动行为的干预研究进展[J]. 护理学报, 2025, 32(3): 38-42. |
| [5] | 陈恩琳, 莫丰菱, 庄泽明, 张明哲, 周佳坤, 黄丽芳, 纪龙飞, 张莉芳. 脑卒中单侧空间忽略评估工具的范围综述[J]. 护理学报, 2025, 32(3): 43-49. |
| [6] | 朱天顺, 朱可可, 薛会元, 焦聪聪, 魏长慧, 王贺. 信息框架效应理论在健康管理领域应用的范围综述[J]. 护理学报, 2025, 32(2): 44-49. |
| [7] | 刘畅, 张维, 王翠雪, 岳鹏. ICU实施非限制性探视制度的影响因素研究进展[J]. 护理学报, 2025, 32(1): 34-38. |
| [8] | 李珂, 贺雨琼, 李雨蔚, 常颖. 脑卒中患者跌倒恐惧干预研究的范围综述[J]. 护理学报, 2025, 32(1): 50-55. |
| [9] | 方雅婷, 王岩, 王哲芸, 余云, 徐婷婷. 经口气管插管患者口腔功能减退的研究进展[J]. 护理学报, 2024, 31(9): 28-31. |
| [10] | 陈莹莹, 丁红, 张根生. 患儿术后谵妄影响因素的研究进展[J]. 护理学报, 2024, 31(9): 32-35. |
| [11] | 李丁丁, 王帅有, 朱杉杉, 郭鑫, 张会敏, 王宏茹, 潘勤. 脑卒中患者支持性照护需求评估工具的范围综述[J]. 护理学报, 2024, 31(9): 48-53. |
| [12] | 张小莉, 杨鑫玉, 肖宇, 刘春燕, 张璐, 伍晓琴, 黄月霖, 傅静. 晚期癌症患者代理决策者安宁疗护决策后悔研究的范围综述[J]. 护理学报, 2024, 31(8): 49-54. |
| [13] | 马瑞瑞, 范晓莉, 徐姝娟, 张伟, 陈婷, 谈飞飞. 护士参与终末期患者临终决策体验的质性研究[J]. 护理学报, 2024, 31(7): 6-11. |
| [14] | 郭俊晨, 刘超毅, 戴云云, 蒋思珊, 杨索, 谌永毅. 虚拟现实技术在生命末期患者中应用的范围综述[J]. 护理学报, 2024, 31(7): 40-45. |
| [15] | 梅紫琦, 金胜姬, 李玮彤, 柏亚妹, 宋玉磊, 李伊婷, 王萌, 徐桂华. 智能机器人在护理健康教育领域中应用的范围综述[J]. 护理学报, 2024, 31(7): 57-62. |
|
||