Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives.
Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives.
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DOI：
10.1136/bmjopen-2020-041873
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发表时间：
2020-10-08
期刊：
影响因子：
2.9
通讯作者：
Cooper C
中科院分区：
文献类型：
--
作者：
Rees JL;Burton A;Walters KR;Leverton M;Rapaport P;Herat Gunaratne R;Beresford-Dent J;Cooper C
探讨痴呆患者及其照护者如何经历和协商共病长期疾病的自我管理。82个半结构化访谈的二次主题分析。11名痴呆症患者，22名家庭护理人员，19名卫生专业人员和30名家庭护理人员。我们确定了三个总体主题：(1)替代自我管理的过程：利益相关者平衡了痴呆症患者保留自主权的愿望与降低医疗依从性的风险。帮助痴呆症患者服药的任务被认为是介于个人护理和医疗活动之间的中间环节；关于哪些专业人员可以执行这项活动的规则有时会引起冲突。(2)护理网络中的沟通：家庭照顾者经常与服务机构沟通，并就如何实施医嘱做出决策。在家庭照顾者或家庭护理工作者没有取代自我管理的情况下，对全科医生来说，识别自我管理的变化并决定何时进行干预可能是一项挑战。(3)身体健康对痴呆的影响和对痴呆的影响：医疗保健专业人员认识到身体健康和认知的相互关系，并相应地调整护理。一些针对长期疾病的治疗方法在不适应痴呆症的情况下被认为是没有帮助的。保健专业人员和家庭护理人员有时感到，家庭护理人员无法接受现有的治疗方法可能对痴呆症患者没有帮助，这有时导致治疗效果存疑的继续。替代自我管理的过程是随着痴呆症状的进展而演变的，依赖于护理网络中的沟通，同时考虑痴呆对身体健康的影响和来自痴呆的影响，实现身体健康的整体管理。护理决策必须将痴呆症患者作为一个整体加以考虑，并以现实的结果和最佳利益为基础。
To explore how the self-management of comorbid long-term conditions is experienced and negotiated by people with dementia and their carers. Secondary thematic analysis of 82 semi-structured interviews. Community settings across the United Kingdom. 11 people with dementia, 22 family carers, 19 health professionals and 30 homecare staff. We identified three overarching themes: (1) The process of substituting self-management: stakeholders balanced the wishes of people with dementia to retain autonomy with the risks of lower adherence to medical treatments. The task of helping a person with dementia to take medication was perceived as intermediate between a personal care and a medical activity; rules about which professionals could perform this activity sometimes caused conflict. (2) Communication in the care network: family carers often communicated with services and made decisions about how to implement medical advice. In situations where family carers or homecare workers were not substituting self-management, it could be challenging for general practitioners to identify changes in self-management and decide when to intervene. (3) Impact of physical health on and from dementia: healthcare professionals acknowledged the inter-relatedness of physical health and cognition to adapt care accordingly. Some treatments prescribed for long-term conditions were perceived as unhelpful when not adapted to the context of dementia. Healthcare professionals and homecare workers sometimes felt that family carers were unable to accept that available treatments may not be helpful to people with dementia and that this sometimes led to the continuation of treatments of questionable benefit. The process of substituting self-management evolves with advancement of dementia symptoms and relies on communication in the care network, while considering the impact on and from dementia to achieve holistic physical health management. Care decisions must consider people with dementia as a whole, and be based on realistic outcomes and best interests.
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影响因子：
105.7
作者：
Livingston, Gill;Leavey, Gerard;Cooper, Claudia
通讯作者：
Cooper, Claudia
影响因子：
--
作者：
Järvinen TA;Prince S
通讯作者：
Prince S
在临床环境中，对患有痴呆症患者的慢性疾病自我管理支持。
影响因子：
3.3
作者：
Ibrahim JE;Anderson LJ;MacPhail A;Lovell JJ;Davis MC;Winbolt M
通讯作者：
Winbolt M
影响因子：
4.1
作者：
Lord K;Livingston G;Robertson S;Cooper C
通讯作者：
Cooper C
影响因子：
3.8
作者：
Lorig, KR;Holman, HR
通讯作者：
Holman, HR