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本文引用的文献

1
"It Is Hard Work, But It Is Worth It": Patients and Spouses' Experiences of a Nursing Intervention to Promote Adjustment to Deep Brain Stimulation for Parkinson's Disease-A Feasibility Study.“这是一项艰苦的工作,但很值得”:患者及其配偶对一项促进帕金森病深部脑刺激适应的护理干预措施的体验——一项可行性研究
ANS Adv Nurs Sci. 2018 Apr/Jun;41(2):174-187. doi: 10.1097/ANS.0000000000000208.
2
Experiences of encounters with healthcare professionals through the lenses of families living with chronic illness.从患有慢性病的家庭的视角来看待与医疗保健专业人员的互动经历。
J Clin Nurs. 2018 Feb;27(3-4):836-847. doi: 10.1111/jocn.14126. Epub 2017 Dec 7.
3
Bridging the Gaps in Patient Education for DBS Surgery in Parkinson's Disease.弥合帕金森病脑深部电刺激手术患者教育中的差距。
Parkinsons Dis. 2017;2017:9360354. doi: 10.1155/2017/9360354. Epub 2017 Aug 7.
4
Beyond patient-centered care: person-centered care for Parkinson's disease.超越以患者为中心的护理:帕金森病的以人为本的护理
NPJ Parkinsons Dis. 2016 Sep 22;2:16019. doi: 10.1038/npjparkd.2016.19. eCollection 2016.
5
Optimizing psychosocial adjustment after deep brain stimulation of the subthalamic nucleus in Parkinson's disease.帕金森病丘脑底核脑深部电刺激术后心理社会适应的优化
Mov Disord. 2017 Aug;32(8):1155-1158. doi: 10.1002/mds.27032. Epub 2017 May 15.
6
'I'm worried about getting water in the holes in my head': A phenomenological psychology case study of the experience of undergoing deep brain stimulation surgery for Parkinson's disease.“我担心脑袋上的洞进水”:帕金森病深部脑刺激手术体验的现象学心理学案例研究
Br J Health Psychol. 2017 Feb;22(1):94-109. doi: 10.1111/bjhp.12219. Epub 2016 Nov 17.
7
Involving Patients in Weighting Benefits and Harms of Treatment in Parkinson's Disease.让患者参与权衡帕金森病治疗的利弊
PLoS One. 2016 Aug 30;11(8):e0160771. doi: 10.1371/journal.pone.0160771. eCollection 2016.
8
Infusion treatments and deep brain stimulation in Parkinson's Disease: The role of nursing.帕金森病的输液治疗与深部脑刺激:护理的作用
Geriatr Nurs. 2016 Nov-Dec;37(6):434-439. doi: 10.1016/j.gerinurse.2016.06.012. Epub 2016 Jul 18.
9
Patients' experiences of deep brain stimulation for Parkinson's disease: a qualitative systematic review and synthesis.帕金森病患者接受脑深部电刺激治疗的体验:一项定性系统评价和综合研究。
BMJ Open. 2016 Jun 23;6(6):e011525. doi: 10.1136/bmjopen-2016-011525.
10
Relational Issues Within Couples Coping With Parkinson's Disease: Implications and Ideas for Family-Focused Care.夫妻应对帕金森病过程中的关系问题:以家庭为中心的护理的意义与思路。
J Fam Nurs. 2016 May;22(2):224-51. doi: 10.1177/1074840716640605. Epub 2016 Apr 4.

个性化的三人护士会议有助于帕金森病患者夫妇适应脑深部电刺激治疗后的生活。

individualized and triadic nurse meetings support couples adjustment to living with deep brain stimulation for Parkinson's disease.

作者信息

Haahr Anita, Norlyk Annelise, Hall Elisabeth O C, Hansen Kirsten Elisabeth, Østergaard Karen, Kirkevold Marit

机构信息

Research Centre for Health and Welfare Technology, Programme for Rehabilitation, VIA University College, Aarhus, Denmark.

Public Health, Nursing, Aarhus University, Aarhus, Denmark.

出版信息

Int J Qual Stud Health Well-being. 2020 Dec;15(1):1748361. doi: 10.1080/17482631.2020.1748361.

DOI:10.1080/17482631.2020.1748361
PMID:32268846
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7178889/
Abstract

Treatment with deep brain stimulation for Parkinson's disease, leads to a rapid improvement in mobility, which may challenge patients and spouses when adjusting to everyday life. An intervention, developed to support the adjustment to everyday life with DBS, demonstrated that individualized meetings with a specialized nurse was experienced as important and fruitful by both patient and spouses.  The aim was to gain a deeper understanding of how the meetings contributed to the adjustment process.  38 audio-recorded meetings and six written summaries from eight couples participating in the intervention, were analyzed in a hermeneutic process.  The analysis revealed four themes: A relational triad of co-creating personal knowing. Sharing and listening in an atmosphere of trust and openness. Unveiling the couple's everyday life, coping strategies and expectations. Supporting adjustment through knowing their personal story.  The triadic dynamics in the meetings were quite particular. The main focus was the patients' and spouses' stories, individually and as a couple. The DBS nurse pursues solutions based on professional and specialized knowledge of Parkinson's disease and the couple's everyday life. Thus, the intervention meetings offered tailored, individualized and specialized care in supporting adjustment to DBS for PD both individually and as couples.

摘要

帕金森病的深部脑刺激治疗可使患者的运动能力迅速改善,这在患者及其配偶适应日常生活时可能会带来挑战。一项旨在支持通过深部脑刺激适应日常生活的干预措施表明,患者及其配偶都认为与专科护士进行个性化会面非常重要且富有成效。目的是更深入地了解这些会面如何促进适应过程。在一个诠释学过程中,对参与该干预措施的八对夫妇的38次录音会面和六份书面总结进行了分析。分析揭示了四个主题:共同创造个人认知的关系三元组。在信任和开放的氛围中分享与倾听。揭示夫妻的日常生活、应对策略和期望。通过了解他们的个人故事来支持适应。会面中的三元动态非常独特。主要焦点是患者及其配偶各自以及作为夫妻的故事。深部脑刺激护士根据帕金森病的专业知识和夫妻的日常生活寻求解决方案。因此,干预会面提供了量身定制、个性化和专业化的护理,以支持帕金森病患者个体及其夫妻双方适应深部脑刺激治疗。