Nygård Louise
Division of Occupational Therapy, Karolinska institutet, Sweden.
Scand J Occup Ther. 2006 Jun;13(2):101-12. doi: 10.1080/11038120600723190.
This paper suggests and discusses a methodological approach that aims to facilitate the inclusion of people with dementia in research where the ambition is to better understand their experiences. People with dementia have commonly not been included as informants in research as their cognitive deficits have been regarded as a hindrance. Moreover, in the qualitative research tradition, most inquiries rely on data obtained from interviews, thereby requiring communication and verbal skills, which are skills that are affected early in the cause of dementia. Consequently, the considerably under-researched area of how dementia is experienced and managed from the perspective of those afflicted has long been put aside. This paper suggests that a combination of qualitative observations and adapted interviews may make it possible for people with dementia to participate as research informants. Issues concerned with creating a relationship with informants with dementia and helping them to elicit their experiences are elaborated and discussed. Some suggestions are made concerning how the context can be used for this intent, and how the observations and interviews can be adapted to the informants with dementia.
本文提出并讨论了一种方法论方法，旨在促进痴呆症患者参与研究，此类研究旨在更好地了解他们的经历。痴呆症患者通常未被纳入研究对象，因为他们的认知缺陷被视为一种障碍。此外，在定性研究传统中，大多数调查依赖于访谈获得的数据，因此需要沟通和语言技能，而这些技能在痴呆症病程早期就会受到影响。因此，从患者角度出发研究痴呆症体验与应对方式这一长期未得到充分研究的领域，长期以来一直被搁置一旁。本文认为，定性观察与适应性访谈相结合，可能会使痴呆症患者能够作为研究对象参与其中。文中详细阐述并讨论了与痴呆症患者建立关系以及帮助他们分享自身经历相关的问题。文中还就如何利用研究背景实现这一目标，以及如何使观察和访谈适应痴呆症患者提出了一些建议。
