一种贯穿生命末期的照护模式：追求常态。
A model of caregiving through the end of life: seeking normal.
作者信息
Penrod Janice, Hupcey Judith E, Shipley Peggy Z, Loeb Susan J, Baney Brenda
机构信息
School of Nursing and College of Medicine, The Pennsylvania State University, University Park, USA.
出版信息
West J Nurs Res. 2012 Mar;34(2):174-93. doi: 10.1177/0193945911400920. Epub 2011 Mar 14.
Abstract
Informal family caregivers provide significant contributions to end-of-life (EOL) care. A theoretical model of the phases and transitions of EOL caregiving was explicated using grounded theory methods to explore the experiences of 46 family caregivers of adults suffering a variety of life-limiting conditions. The derived model describes four phases of caregiving spanning prediagnosis through bereavement. Phases are demarcated by key transitions experienced when the illness progression manifestly challenges the established "steady state" achieved by the caregiver. The basic social process was defined as "seeking normal" as caregivers sought reliable patterns of everyday life while meeting the demands of caregiving. Understanding the progression of EOL caregiving enables clinicians to better support family caregivers as both coproviders and corecipients of care.
摘要
非正式家庭照护者对临终关怀做出了重大贡献。运用扎根理论方法阐述了一个临终照护阶段与转变的理论模型，以探究46名照护患有各种生命受限疾病的成年人的家庭照护者的经历。所推导的模型描述了从疾病诊断前到丧亲之痛的四个照护阶段。各阶段由疾病进展明显挑战照护者所建立的“稳定状态”时经历的关键转变来划分。基本社会过程被定义为“寻求常态”，因为照护者在满足照护需求的同时寻求可靠的日常生活模式。了解临终照护的进展情况能使临床医生更好地支持家庭照护者，使其成为护理的共同提供者和共同接受者。
相似文献
1
A model of caregiving through the end of life: seeking normal.一种贯穿生命末期的照护模式：追求常态。
West J Nurs Res. 2012 Mar;34(2):174-93. doi: 10.1177/0193945911400920. Epub 2011 Mar 14.
2
Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998-2008).第二部分：生命末期的家庭居家护理：已发表定性研究的综合综述（1998-2008 年）。
Palliat Med. 2010 Sep;24(6):594-607. doi: 10.1177/0269216310371411. Epub 2010 Jun 24.
3
Conceptual challenges in the study of caregiver-care recipient relationships.照顾者与受照顾者关系研究中的概念性挑战。
Nurs Res. 2008 Sep-Oct;57(5):367-72. doi: 10.1097/01.NNR.0000313499.99851.0c.
4
Managing caregiving at home: Thai caregivers living in the United States.在家中管理照料工作：生活在美国的泰国照料者
J Cult Divers. 2004 Spring;11(1):18-24.
5
Family experience caring for terminally ill patients with cancer in Hong Kong.香港家庭照顾癌症末期患者的经历。
Cancer Nurs. 2003 Aug;26(4):267-75. doi: 10.1097/00002820-200308000-00003.
6
Resilience and transitions from dementia caregiving.痴呆症护理中的适应力与转变
J Gerontol B Psychol Sci Soc Sci. 2007 Jan;62(1):P38-44. doi: 10.1093/geronb/62.1.p38.
7
Tacit definitions of informal caregiving.非正式照料的隐性定义。
J Adv Nurs. 2001 Jan;33(2):175-81. doi: 10.1046/j.1365-2648.2001.01650.x.
8
End-of-life caregiving trajectories.临终关怀轨迹
Clin Nurs Res. 2011 Feb;20(1):7-24. doi: 10.1177/1054773810384852.
9
Loss and bereavement: HIV/AIDS family caregiving experiences.丧失与哀伤：艾滋病病毒/艾滋病家庭护理经历
Can J Nurs Res. 1997 Winter;29(4):73-86.
10
The health and well-being of caregivers of children with cerebral palsy.脑瘫患儿照料者的健康与幸福。
Pediatrics. 2005 Jun;115(6):e626-36. doi: 10.1542/peds.2004-1689.
引用本文的文献
1
Being an observer of one's own life-a meta-synthesis on the experience of mechanically ventilated patients in intensive care units.作为自身生活的观察者——对重症监护病房中机械通气患者体验的元综合分析
Crit Care. 2025 Mar 8;29(1):105. doi: 10.1186/s13054-025-05326-6.
2
A qualitative study on redefining normality in relatives of patients with advanced cancer.一项关于重新定义晚期癌症患者亲属“正常”的定性研究。
Cancer Med. 2024 May;13(10):e7211. doi: 10.1002/cam4.7211.
3
Evaluation of the usability, accessibility and acceptability for a family support intervention (Family-Focused Support Conversation) for end of life care discharge planning from hospital: A participatory learning and action research study.对医院临终关怀出院计划的家庭支持干预措施（以家庭为中心的支持对话）的可用性、可及性和可接受性进行评估：一项参与性学习与行动研究。
Int J Nurs Stud Adv. 2021 Jan 23;3:100022. doi: 10.1016/j.ijnsa.2021.100022. eCollection 2021 Nov.
4
Urgent needs of caregiving in ageing populations with Alzheimer's disease and other chronic conditions: Support our loved ones.老龄化人口中阿尔茨海默病和其他慢性病患者的迫切护理需求：关爱我们的亲人。
Ageing Res Rev. 2023 Sep;90:102001. doi: 10.1016/j.arr.2023.102001. Epub 2023 Jul 5.
5
Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study.肌萎缩侧索硬化症患者的护理、负担和自我描述的积极方面：一项探索性、纵向、混合方法研究。
BMJ Open. 2023 Jan 20;13(1):e064254. doi: 10.1136/bmjopen-2022-064254.
6
Adolescents' and young people's needs and preferences for support when living with a parent with life-threatening cancer: a grounded theory study.青少年和年轻人在与患有危及生命的癌症的父母一起生活时对支持的需求和偏好：扎根理论研究。
BMC Palliat Care. 2022 Sep 22;21(1):164. doi: 10.1186/s12904-022-01055-7.
7
A Conceptual Model of Experiences With Digital Technologies in Aging in Place: Qualitative Systematic Review and Meta-synthesis.就地养老中数字技术体验的概念模型：定性系统评价与元综合
JMIR Aging. 2022 Sep 9;5(3):e34872. doi: 10.2196/34872.
8
"Not Sure Sharing Does Anything Extra for Me": Understanding How People with Cardiovascular Disease Conceptualize Sharing Personal Health Data with Peers.“不确定分享对我有什么额外的好处”：理解心血管疾病患者如何将个人健康数据与同行分享。
Int J Environ Res Public Health. 2022 Aug 2;19(15):9508. doi: 10.3390/ijerph19159508.
9
Systematic review of psychosocial needs assessment tools for caregivers of paediatric patients with dermatological conditions.系统评价儿科皮肤病患者照顾者的心理社会需求评估工具。
BMJ Open. 2022 Jan 19;12(1):e055777. doi: 10.1136/bmjopen-2021-055777.
10
"Walking a tightrope": A grounded theory approach to informal caregiving for amyotrophic lateral sclerosis.“走钢丝”：肌萎缩侧索硬化症非正规护理的扎根理论方法。
Health Soc Care Community. 2022 Sep;30(5):e1935-e1947. doi: 10.1111/hsc.13625. Epub 2021 Oct 31.
本文引用的文献
1
End-of-life caregiving trajectories.临终关怀轨迹
Clin Nurs Res. 2011 Feb;20(1):7-24. doi: 10.1177/1054773810384852.
2
Coping with a diagnosis of breast cancer-literature review and implications for developing countries.应对乳腺癌诊断——文献回顾及对发展中国家的启示。
Breast J. 2009 Nov-Dec;15(6):615-22. doi: 10.1111/j.1524-4741.2009.00812.x. Epub 2009 Aug 17.
3
Estimating the quantity and economic value of family caregiving for community-dwelling older persons in the last year of life.估算社区居住老年人生命最后一年家庭照护的时长及经济价值。
J Am Geriatr Soc. 2009 Sep;57(9):1654-9. doi: 10.1111/j.1532-5415.2009.02390.x. Epub 2009 Jul 21.
4
Supporting lay carers in end of life care: current gaps and future priorities.在临终关怀中支持非专业护理人员：当前的差距与未来的优先事项。
Palliat Med. 2009 Jun;23(4):339-44. doi: 10.1177/0269216309104875. Epub 2009 Mar 20.
5
Predicting longitudinal patterns of psychological distress in older husband caregivers: further analysis of existing data.预测老年丈夫照料者心理困扰的纵向模式：对现有数据的进一步分析
Aging Ment Health. 2008 May;12(3):333-42. doi: 10.1080/13607860801933414.
6
Quality of life of family caregivers of cancer survivors: across the trajectory of the illness.癌症幸存者家庭照顾者的生活质量：贯穿疾病轨迹
Cancer. 2008 Jun 1;112(11 Suppl):2556-68. doi: 10.1002/cncr.23449.
7
Caring for the caregivers.关爱护理者。
J Psychosoc Nurs Ment Health Serv. 2007 Nov;45(11):17-20. doi: 10.3928/02793695-20071101-05.
8
Financial stress and strain associated with terminal cancer--a review of the evidence.终末期癌症相关的经济压力与紧张——证据综述
Palliat Med. 2007 Oct;21(7):595-607. doi: 10.1177/0269216307082476.
9
The emotional toll of spousal morbidity and mortality.配偶患病和死亡带来的情感负担。
Am J Geriatr Psychiatry. 2007 Sep;15(9):772-9. doi: 10.1097/JGP.0b013e318050c9ae.
10
Cognitive behavioural therapy for tinnitus.耳鸣的认知行为疗法。
Cochrane Database Syst Rev. 2007 Jan 24(1):CD005233. doi: 10.1002/14651858.CD005233.pub2.
Zotero 插件