护理学报 ›› 2021, Vol. 28 ›› Issue (20): 30-38.doi: 10.16460/j.issn1008-9969.2021.20.030
宋静雨, 舒瑶雅, 王蒙蒙, 徐天梦, 岳鹏
SONG Jing-yu, SHU Yao-ya, WANG Meng-meng, XU Tian-meng, YUE Peng
摘要: 目的 系统评价和整合终末期病人配偶照护者的需求。方法 计算机检索PubMed、The Cochrane Library、Web of Science、MEDLINE、CINAHL、EMBase、Scopus、中国知网、CBM、万方、维普数据库,收集有关终末期病人配偶照护者需求的质性研究,检索时限为建库至2020年3月。采用澳大利亚JBI循证卫生保健中心质性研究质量评价标准(2017版)评价文献质量,运用汇集性整合方法对结果进行整合。结果 共纳入15篇文献,提炼出54个结果,归类成13个类属,合成3个整合结果。整合结果1是配偶持续需要通过家庭及专业支持获得身心、经济援助,包括3个类别:生理、安全、爱与归属;整合结果2是配偶发挥自我潜能,为积极治疗阶段的病人提供全面照顾的需求,包括4个类别:安全、爱与归属、尊重、自我实现;整合结果3是配偶为拒绝积极治疗/濒死阶段的病人做死亡准备,提升其死亡质量的需求,包括4个类别:安全、爱与归属、尊重、自我实现。结论 配偶在照顾终末期病人时存在各种各样的需求,政府、医疗机构、社区应重视疾病对配偶照护者的影响,了解并尊重其需求,为其提供物质和精神支持,从而提高照护能力和改善生活质量。
中图分类号:
[1] 国家卫生计生委.《中国居民营养与慢性病状况报告(2015)》[R/OL].(2015-06-30)[2020-4-25].http://www.gov.cn/xinwen/2015-06/30/content_2887030.htm. [2] Harding R, Gao W, Jackson D, et al.Comparative Analysis of Informal Caregiver Burden in Advanced Cancer, Dementia, and Acquired Brain Injury[J]. J Pain Symptom Manage,2015,50(4):445-452.DOI:10.1016/j.jpainsymman.2015.04.005. [3] 杜鹏,王红丽.老年人日常照料角色介入的差序格局研究[J].人口与发展,2014,20(5):85-92.DOI:10.3969/j.issn.1674-1668.2014.05.011. [4] Adelman RD, Tmanova LL, Delgado D, et al.Caregiver Burden: A Clinical Review[J]. JAMA, 2014,311(10):1052.DOI:10.1001/jama.2014.304. [5] Ketcher D, Trettevik R, Vadaparampil ST, et al.Caring for a Spouse with Advanced Cancer: Similarities and Differences for Male and Female Caregivers[J]. J Behav Med, 2020,43(5):817-828.DOI:10.1007/s10865-019-00128-y. [6] Buckley T, Spinaze M,Bartrop R, et al.The Nature of Death, Coping Response and Intensity of Bereavement Following Death in the Critical Care Environment[J]. Aust Crit Care,2015,28(2):64-70.DOI:10.1016/j.aucc.2015.02.003. [7] Holtslander L, Duggleby W, Teucher U, et al.Developing and Pilot-testing a Finding Balance Intervention for Older Adult Bereaved Family Caregivers: A Randomized Feasibility Trial[J]. Eur J Oncol Nurs,2016,21:66-74.DOI:10.1016/j.ejon.2016.01.003. [8] Egerod I, Kaldan G, Shaker SB, et al.Spousal Bereavement after Fibrotic Interstitial Lung Disease: A Qualitative Study[J].Respir Med,2019,146:129-136.DOI:10.1016/j.rmed.2018.12.008. [9] 陈李妍. 居家临终癌症患者家庭照顾者照顾体验研究[D].广州:南方医科大学,2019. [10] Hisamatsu M,Shinchi H,Tsutsumi Y.Experiences of Spouses of Patients with Cancer from the Notification of Palliative Chemotherapy Discontinuation to Bereavement: A Qualitative Study[J]. Eur J Oncol Nurs,2020,45:101721.DOI:10.1016/j.ejon.2020.101721. [11] Rodenbach RA, Norton SA, Wittink MN, et al.When Chemotherapy Fails: Emotionally Charged Experiences Faced by Family Caregivers of Patients with Advanced Cancer[J]. Patient Educ Couns, 2019, 102(5):909-915.DOI:10.1016/j.pec.2018.12.014. [12] Chung BPM, Leung D, Leung SM, et al.Beyond Death and Dying: How Chinese Spouses Navigate the Final Days with Their Loved Ones Suffering from Terminal Cancer[J]. Support Care Cancer, 2018,26(1):261-267.DOI:10.1007/s00520-017-3844-z. [13] Judd R, Guy H, Howard RA.Caring for a Dying Partner: The Male Experience[J]. J Palliat Care,2018,34(1):5-11.DOI:10.1177/0825859718774679. [14] Meunier-Beillard N, Ponthier N, Lepage C, et al.Identification of Resources and Skills Developed by Partners of Patients with Advanced Colon Cancer: A Qualitative Study[J]. Support Care Cancer,2018,26(12):4121-4131.DOI:10.1007/s00520-018-4283-1. [15] Turner M, King C, Milligan C, et al.Caring for a Dying Spouse at the End of Life:‘It's One of the Things You Volunteer for When You Get Married': A Qualitative Study of the Oldest Carers' Experiences[J]. Age Ageing,2016,45(3):421-426.DOI:10.1093/ageing/afw047. [16] Chow AY, Chan CL, Ho SM, et al.Qualitative Study of Chinese Widows in Hong Kong: Insights for Psycho-social Care in Hospice Settings[J]. Palliat Med,2016,20(5):513-520.DOI:10.1191/0269216306pm1168oa. [17] 金丽萍,张绮.家庭式病房晚期癌症患者配偶照护感受的质性研究[J].解放军护理杂志,2016,33(20):20-23.DOI:10.3969/j.issn.1008-9993.2016.20.005. [18] Park EM, Check DK, Yopp JM, et al.An Exploratory Study of End-of-life Prognostic Communication Needs as Reported by Widowed Fathers Due to Cancer[J]. Psychooncology, 2015,24(11):1471-1476.DOI:10.1002/pon.3757. [19] Tabler J, Utz RL, Ellington L, et al.Missed Opportunity: Hospice Care and the Family[J].J Soc Work End Life Palliat Care,2015,11(3-4):224-243.DOI:10.1080/15524256.2015.1108896. [20] Mossin H, Landmark B T.Being Present in Hospital When the Patient is Dying - A Grounded Theory Study of Spouses Experiences[J]. Eur J Oncol Nurs,2010,15(5):382-389.DOI:10.1016/j.ejon.2010.11.005. [21] Jo S, Brazil K, Lohfeld L, et al.Caregiving at the End of Life: Perspectives from Spousal Caregivers and Care Recipients[J]. Palliat Support Care, 2007, 5(1):11-17.DOI:10.1017/s1478951507070034. [22] Fisker T, Strandmark M.Experiences of Surviving Spouse of Terminally Ill Spouse: A Phenomenological Study of an Altruistic Perspective[J].Scand J Caring Sci, 2007, 21(2):274-281.DOI:10.1111/j.1471-6712.2007.00466.x. [23] Winterling J, Wasteson E, Glimelius B, et al.Substantial Changes in Life-perceptions in Patients with Newly Diagnosed Advanced Cancer and Their Spouses[J]. Cancer Nurs,2004, 27(5):381-388.DOI:10.1097/00002820-200409000-00008. [24] Duke S.An Exploration of Anticipatory Grief: The Lived Experience of People During Their Spouses' Terminal Illness and in Bereavement[J]. J Adv Nurs,1998,28(4):829-839.DOI:10.1046/j.1365-2648.1998.00742.x. [25] 陈向明. 质的研究方法与社会科学研究[M].北京:教育科学出版社,2000. [26] The Joanna Briggs Institute. Critical Appraisal Checklist for Qualitative Research[R/OL].[2020-04-25].http://joannabriggs.org/research/critical-appraisal-tools.html. [27] 亚伯拉罕·马斯洛.动机与人格[M].北京:中国人民大学出版社,1943. [28] Lockwood C,Munn Z, Porritt K.Qualitative Research Synthesis: Methodological Guidance for Systematic Reviewers Utilizing Meta-aggregation[J]. Int J Evid Based Healthc,2015,13(3):179-187.DOI:10.1097/XEB.0000000000000062. [29] 胡雁. 循证护理学[M].北京:人民卫生出版社,2012. [30] 李小妹. 护理学导论[M].北京:人民卫生出版社,2017. [31] Kim JE, Dodd M, West C, et al.The PRO-SELF Pain Control Program Improves Patients' Knowledge of Cancer Pain Management[J]. Oncol Nurs Forum,2004,31(6):1137-1143.DOI:10.1188/04.ONF.1137-1143. [32] 唐颖,徐晓玉,李晓玲.307例住院癌痛患者疼痛控制满意度调查[J].护理学报, 2013,20(14):24-26.DOI:10.3969/j.issn.1008-9969.2013.14.010. [33] 李佳倩,朱冰洁,李梦媛,等.晚期癌症患者配偶恐惧疾病进展的现状及影响因素分析[J].护理学报,2019,26(14):5-9.DOI:10.16460/j.issn1008-9969.2019.14.005. [34] 王宝莲,庞书勤,吴异兰,等.老年临终患者家属照护需求的质性研究[J].解放军护理杂志,2016,33(23):11-14.DOI:10.3969/j.issn.1008-9993.2016.23.003. [35] 张弛,王君俏,胡雁,等.居家老年临终患者家属照顾者照顾感受的质性研究[J].护理学杂志,2011,26(19):75-78.DOI:10.3870/hlxzz.2011.19.075. [36] 邓红莉. 180例晚期癌症病人的心理需求[J].护理实践与研究,2010, 7(1):93-94.DOI:10.3969/j.issn.1672-9676.2010.01.051. [37] 陈璐,蔡艳芳,杨娟丽,等.癌症晚期病人直系亲属疲劳的护理干预效果研究[J].护理研究,2013,27(34):3891-3892.DOI:10.3969/j.issn.1009-6493.2013.34.023. [38] 李德明,陈天勇,李贵芸.空巢老人心理健康状况研究[J].中国老年学杂志,2003, 23(7):405-407.DOI:10.3969/j.issn.1005-9202.2003.07.004. [39] Humphries B, Lauzier S, Drolet M, et al.Wage Losses among Spouses of Women with Nonmetastatic Breast Cancer[J].Cancer,2020,126(5):1124-1134.DOI:10.1002/cncr.32638.[40] Masterson MP, Hurley KE, Zaider T, et al. Toward a Model of Continuous Care: A Necessity for Caregiving Partners[J]. Palliat Support Care,2015, 13(5):1459-1467.DOI10.1017/S1478951515000231. [41] Weerakkody I, Hales S, Fernandes S, et al.The Quality of Dying and Death in a Residential Hospice[J].J Pain Symptom Manage, 2018, 56(4):567-574.DOI:10.1016/j.jpainsymman.2018.07.004. [42] Manne SL, Siegel S, Kashy D, et al.Cancer-specific Relationship Awareness, Relationship Communication, and Intimacy among Couples Coping with Early-stage Breast Cancer[J]. J Soc Pers Relat,2013,31(3):314-334.DOI:10.1177/0265407513494950. [43] 刘艺. 宁养患者心理抚慰的社会工作介入[D].吉林:长春工业大学,2016. [44] 孙苏宁. 终末期癌症病人恐惧心理的护理[J].肿瘤研究与临床,1995, 7(1):65-66. [45] 张春明. 老年患者家庭式临终关怀的护理体会[J].世界最新医学信息文摘,2017,17(7):168-170. [46] Ornstein KA, Aldridge MD, Garrido MM, et al.The Use of Life-sustaining Procedures in the Last Month of Life Is Associated with More Depressive Symptoms in Surviving Spouses[J]. J Pain Symptom Manage,2017,53(2):178-187.DOI:10.1016/j.jpainsymman.2016.08.023. [47] Yopp JM, Deal AM, Nakamura ZM, et al.Psychological and Parental Functioning of Widowed Fathers:The First Two Years[J]. J Fam Psychol,2019,33(5):565-574.DOI:10.1037/fam0000528. |
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