临终患儿父母哀伤辅导的证据总结

doi:10.3761/j.issn.0254-1769.2024.05.004

摘要/Abstract

摘要：

目的检索、评价并总结临终患儿父母哀伤辅导的最佳证据。方法系统检索UpToDate、BMJ Best Practice、澳大利亚乔安娜布里格斯研究所循证卫生保健中心数据库、Cochrane Library、PubMed、Embase、中国知网、万方数据库等国内外数据库、指南网、专业学会及政府网站中关于临终患儿父母哀伤辅导的文献，包括指南、临床决策、推荐实践、证据总结、系统评价、专家共识。检索时限为建库至2023年2月18日。由2名研究人员进行文献质量评价、资料提取以及证据汇总。结果共纳入9篇文献，其中指南2篇、临床决策1篇、系统评价5篇、专家共识1篇。从多学科团队组建、评估、哀伤辅导的时机、住院期间哀伤辅导、临终时哀伤辅导、死亡后哀伤辅导6个方面汇总了24条证据。结论该研究汇总了临终患儿父母哀伤辅导的最佳证据，建议医护人员结合临床情景、父母的文化背景及意愿，审慎地选择并应用证据。

关键词: 临终关怀, 双亲, 居丧, 循证护理学, 儿科护理学

Abstract:

Objective To search，evaluate and summarize the best evidence on bereavement support for parents of terminally ill children. Methods A systematic search for evidence on parental bereavement support was conducted in UpToDate，BMJ Best Clinical Practice，Joanna Briggs Institute Evidence-Based Health Care Center Database，PubMed，Embase，Cochrane Library，CNKI，Wanfang Date and so on，and the literature includes guidelines，clinical decisions，recommended practices，evidence summaries，systematic reviews and expert consensuses. The time range of retrieval was from the database establishment to February 18，2023. Literature quality evaluation，data extraction and evidence summary were performed by 2 researchers. Results A total of 9 articles were included，consisting of 2 guidelines，1 expert consensus，1 clinical decision and 5 systematic reviews. 24 pieces of evidence were summarized on 6 aspects，covering multidisciplinary team building，assessment，timing of support，pre-death support，end-of-life support，and post-mortem support. Conclusion The study summarizes the best evidence on parental bereavement support and provides clinical practice guidance for bereavement support for parents of terminally ill children. Healthcare professionals should combine China’s clinical reality，fully consider the cultural background of both children and parents，follow the principle of individualization，and prudently apply evidence to clinical practice.

Key words: Hospice Care, Parents, Bereavement, Evidence-Based Nursing, Pediatric Nursing

韦双双, 游雪梅, 杨莉洁, 李繁荣, 唐如冰. 临终患儿父母哀伤辅导的证据总结[J]. 中华护理杂志, 2024, 59(5): 540-546.

WEI Shuangshuang, YOU Xuemei, YANG Lijie, LI Fanrong, TANG Rubing. Summary of evidence on bereavement support for parents of terminally ill children[J]. Chinese Journal of Nursing, 2024, 59(5): 540-546.

图/表 4

图1 文献筛选流程图

Figure 1 Literature screening process

表1 纳入文献的基本特征（n=9）

Table 1 Basic characteristics of included literature（n=9）

表2 指南的质量评价结果（n=2）

Table 2 Results of quality evaluation of the guidelines（n=2）

表3 临终患儿父母哀伤辅导的证据总结

Table 3 Summary of best evidence for parental bereavement interventions in terminally ill children

参考文献 32

[1]	Knaul FM, Farmer PE, Krakauer EL, et al. Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage:the Lancet Commission report[J]. Lancet, 2018, 391(10128):1391-1454. DOI URL
[2]	Rosenberg AR, Baker KS, Syrjala K, et al. Systematic review of psychosocial morbidities among bereaved parents of children with cancer[J]. Pediatr Blood Cancer, 2012, 58(4):503-512. DOI PMID
[3]	Bolton JM, Au W, Walld R, et al. Parental bereavement after the death of an offspring in a motor vehicle collision:a population-based study[J]. Am J Epidemiol, 2014, 179(2):177-185. DOI PMID
[4]	Liisa AA, Marja-Terttu T, Päivi ÅK, et al. Health care personnel’s experiences of a bereavement follow-up intervention for grieving parents[J]. Scand J Caring Sci, 2011, 25(2):373-382. DOI PMID
[5]	黄丽, 王春燕, 蒋涛, 等. 癌症终末期患儿家属的哀伤辅导及相关问题探讨[J]. 医院管理论坛, 2020, 37(12):69-70.
	Huang L, Wang CY, Jiang T, et al. Discussion on grief counseling and related issues for family members of children with terminal cancer[J]. Hosp Manag Forum, 2020, 37(12):69-70.
[6]	国家儿童医学中心儿科护理联盟《危重症儿童临终关怀专家共识》制作组. 中国危重症儿童临终关怀专家共识(2022版)[J]. 中国小儿急救医学, 2022, 29(8):600-605.
	The Expert Development Consensus Group from the Committee of Pediatric Nursing of National Children’s Medical Cente. Expert consensus on hospice care for critically ill children in China(2022 edition)[J]. Chin Pediatr Emerg Med, 2022, 29(8):600-605.
[7]	朱政, 胡雁, 周英凤, 等. 推动证据向临床转化(五)证据临床转化研究中的文献质量评价[J]. 护士进修杂志, 2020, 35(11):996-1000.
	Zhu Z, Hu Y, Zhou YF, et al. Promotion evidence to clinical transformation:evidence resource retrieval for the purpose of clinical transformation[J]. J Nurses Train, 2020, 35(11):996-1000.
[33]	Aho AL, Malmisuo J, Kaunonen M. The effects of peer support on post-traumatic stress reactions in bereaved parents[J]. Scand J Caring Sci, 2018, 32(1):326-334. DOI PMID
[34]	Morris SE, Dole OR, Joselow M, et al. The development of a hospital-wide bereavement program:ensuring bereavement care for all families of pediatric patients[J]. J Pediatr Health Care, 2017, 31(1):88-95. DOI URL
[8]	Foster MJ, Shurtz S. Making the critical appraisal for summaries of evidence(CASE) for evidence-based medicine(EBM):critical appraisal of summaries of evidence[J]. J Med Libr Assoc, 2013, 101(3):192-198. DOI URL
[9]	聂玲, 孙小玲, 蒋玲, 等. NICU早产儿睡眠保护的最佳证据总结[J]. 中华护理杂志, 2023, 58(12):1449-1455. DOI URL
	Nie L, Sun XL, Jiang L, et al. Summary of best evidence of sleep protection for premature infants in NICU[J]. Chin J Nurs, 2023, 58(12):1449-1455. DOI URL
[10]	Endo K, Yonemoto N, Yamada M. Interventions for bereaved parents following a child’s death:a systematic review[J]. Palliat Med, 2015, 29(7):590-604. DOI URL
[11]	National Institute for Health and Care Excellence. End of life care for infants,children and young people with life- limiting conditions:planning and amanagement[EB/OL]. (2019-07-30)[2023-04-08]. https://www.nice.org.uk/guidance/ng61/resources/end-of-life-care-for-infants-children-and-young-people-with-lifelimiting-conditions-planning-and-management-pdf-1837568722885.
[12]	Department of Health and Social Care. Child death review statutory and operational guidance[EB/OL]. (2019-09-20)[2023-04-07]. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1120062/child-death-review-statutory-and-operational-guidance-england.pdf.
[13]	Kochen EM, Jenken F, Boelen PA, et al. When a child dies:a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief-and loss theories[J]. BMC Palliat Care, 2020, 19(1):28. DOI PMID
[14]	Donovan LA, Wakefield CE, Russell V, et al. Hospital-based bereavement services following the death of a child:a mixed study review[J]. Palliat Med, 2015, 29(3):193-210. DOI PMID
[15]	王春青, 胡雁. JBI证据预分级及证据推荐级别系统(2014版)[J]. 护士进修杂志, 2015, 30(11):964-967.
	Wang CQ, Hu Y. JBI evidence pre-classification and evidence rank system(2014 edition)[J]. J Nurses Train, 2015, 30(11):964-967.
[16]	Dias N, Hendricks-Ferguson VL, Wei H, et al. A systematic literature review of the current state of knowledge related to interventions for bereaved parents[J]. Am J Hosp Palliat Care, 2019, 36(12):1124-1133. DOI PMID
[17]	Hauer J. Pediatric palliative care[EB/OL]. (2023-03-24)[2023-04-07]. https://www-uptodate-com.webvpn.sjlib.cn/contents/pediatric-palliative-care?search=Pediatric%20palliative%20care&source=search_result&selectedTitle=1-18&usage_type=default&display_rank=1#H37.
[18]	Pelacho-Rios L, Bernabe-Valero G. The loss of a child,bereavement and the search for meaning:a systematic review of the most recent parental interventions[J]. Curr Psychol, 2022:1-26.
[19]	Dias N, Brandon D, Haase JE, et al. Bereaved parents’ health status during the first 6 months after their child’s death[J]. Am J Hosp Palliat Care, 2018, 35(6):829-839. DOI URL
[20]	Kreicbergs UC, Lannen P, Onelov E, et al. Parental grief after losing a child to cancer:impact of professional and social support on long-term outcomes[J]. J Clin Oncol, 2007, 25(22):3307-3312. PMID
[21]	王文超, 胡静, 顾莺, 等. 危重症患儿临终关怀模式的构建[J]. 中华护理杂志, 2019, 54(10):1519-1523. DOI URL
	Wang WC, Hu J, Gu Y, et al. Construction of hospice care model for critical pediatric patients[J]. Chin J Nurs, 2019, 54(10):1519-1523. DOI URL
[22]	Agnew A, Manktelow R, Taylor B, et al. Bereavement needs assessment in specialist palliative care:a review of the literature[J]. Palliat Med, 2010, 24(1):46-59. DOI PMID
[23]	Untas A, Rascle N, Cosnefroy O, et al. Psychometric properties of the French adaptation of the Family Relationship Index (FRI)[J]. Encephale, 2011, 37(2):110-118. DOI PMID
[24]	Pushkarev GS, Zimet GD, Kuznetsov VA, et al. The Multidimensional Scale of Perceived Social Support(MSPSS):reliability and validity of Russian version[J]. Clin Gerontol, 2020, 43(3):331-339. DOI PMID
[25]	Yang Y, Ding RJ, Hu DY, et al. Reliability and validity of a Chinese version of the HADS for screening depression and anxiety in psycho-cardiological outpatients[J]. Compr Psychiatry, 2014, 55(1):215-220. DOI URL
[26]	Stroebe M, Schut H, Boerner K. Continuing bonds in adaptation to bereavement:toward theoretical integration[J]. Clin Psychol Rev, 2010, 30(2):259-268. DOI URL
[27]	马丽, 杨小珍, 南锐伶, 等. 癌症患儿父母恐惧疾病进展的研究进展[J]. 中华护理杂志, 2023, 58(18):2282-2287. DOI URL
	Ma L, Yang XZ, Nan RL, et al. Research progress of parents of cancer children’s fear of disease progress[J]. Chin J Nurs, 2023, 58(18):2282-2287.
[28]	Sieg SE, Bradshaw WT, Blake S. The best interests of infants and families during palliative care at the end of life[J]. Adv Neonatal Care, 2019, 19(2):E9-E14. DOI URL
[29]	张若林, 楼妍, 吴婉英, 等. 癌症患者照顾者角色过渡体验质性研究的Meta整合[J]. 中华护理杂志, 2023, 58(9):1127-1134. DOI URL
	Zhang RL, Lou Y, Wu WY, et al. Meta integration of qualitative research on role transition experience of caregivers of cancer patients[J]. Chin J Nurs, 2023, 58(9):1127-1134. DOI URL
[30]	Price J, Jordan J, Prior L, et al. Living through the death of a child:a qualitative study of bereaved parents’ experiences[J]. Int J Nurs Stud, 2011, 48(11):1384-1392. DOI URL
[31]	康佳迅, 卢红梅, 孙巧枝, 等. 护理本科生安宁疗护课程的构建与实施[J]. 中华护理教育, 2023, 20(3):273-278.
	Kang JX, Lu HM, Sun QZ, et al. Construction and implementation of a hospice care course for nursing undergraduates[J]. Chin J Nurs Educ, 2023, 20(3):273-278.
[32]	Snaman J, Morris SE, Rosenberg AR, et al. Reconsidering early parental grief following the death of a child from cancer:a new framework for future research and bereavement support[J]. Support Care Cancer, 2020, 28(9):4131-4139. DOI