Including older people with dementia in research: challenges and strategies
Including older people with dementia in research: challenges and strategies
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DOI：
10.1080/1360786031000150685
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发表时间：
2003-09-01
影响因子：
3.4
通讯作者：
Tester, S
中科院分区：
文献类型：
--
作者：
Hubbard, G;Downs, MG;Tester, S
本文探讨了将老年痴呆症患者纳入机构照护环境中生活质量的人种学研究的关键挑战和策略。访谈和观察的方法与应对四个研究挑战有关：言语交流障碍、记忆丧失、决策能力和情绪倾向。建议了一系列给予痴呆症患者话语权的战略，其中包括：使用不同的方法为每个痴呆症患者量身定做；更大的灵活性和时间；与痴呆症患者进行初步会晤；与正式和非正式护理人员进行讨论；以及研究培训。研究人员还得出结论认为，观察和采访的使用在性质上有所不同，但对于理解护理环境中的生活质量来说，这两种方式都是“有意义的场合”。
This paper examines key challenges and strategies for including older people with dementia in an ethnographic study of quality of life in institutional care settings. The methods of interview and observation are described in relation to meeting four research challenges: verbal communication impairment, memory loss, decision-making capacity, and emotional disposition. A range of strategies for privileging the voice of the person with dementia is recommended which include: using different methods bespoke to each person with dementia; greater flexibility and time; preliminary meetings with the person with dementia; discussions with formal and informal carers; and research training. The researchers also conclude that the use of observation and interview are 'meaning-making occasions' which are qualitatively different but equally valuable for understanding quality of life in care settings.