Department of Neurology, Danish Dementia Research Centre, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark.
Alzheimer Europe, Luxembourg, Luxembourg.
Health Expect. 2018 Dec;21(6):1056-1065. doi: 10.1111/hex.12799. Epub 2018 Jun 19.
People with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan-European consultation with people with dementia, synthesizing their views on outcomes of psychosocial interventions.
To involve people with dementia in establishing what are meaningful outcomes when participating in psychosocial interventions.
Consultations took place at four divergent sites across Europe, involving twenty-five people with dementia from nine European countries.
The methods used for the consultation were developed through an iterative process involving people with dementia. Data from the consultation were analysed from a thematic analysis approach.
The results suggested that people with dementia wish to participate in interventions that enhance their well-being, confidence, health, social participation and human rights. This highlights a need for improvements in psychosocial research to capture these outcomes.
Involving people with dementia in discussions of psychosocial interventions has enhanced our understanding about meaningful outcome measures in research and methods of data collection. This study suggests that new outcome measures in psychosocial research are needed where concepts of positive psychology and social health can guide innovation and outcome measurement.
痴呆症患者经常被边缘化和排斥在影响之外,这也与痴呆症研究有关。然而,通过患者和公众参与(PPI),人们越来越需要将其纳入其中,但对于研究人员如何充分受益于痴呆症患者在心理社会干预的开发和测试中的参与,仍知之甚少。本文描述了一项与欧洲各地的痴呆症患者进行的泛欧咨询的结果,综合了他们对心理社会干预结果的看法。
让痴呆症患者参与确定参与心理社会干预时的有意义的结果。
在欧洲的四个不同地点进行了咨询,涉及来自九个欧洲国家的二十五名痴呆症患者。
咨询中使用的方法是通过一个涉及痴呆症患者的迭代过程开发的。从主题分析方法对咨询的数据进行了分析。
结果表明,痴呆症患者希望参与能够提高他们的幸福感、信心、健康、社会参与和人权的干预措施。这凸显了需要改进心理社会研究,以捕捉这些结果。
让痴呆症患者参与心理社会干预的讨论,增强了我们对研究中有意义的结果衡量标准和数据收集方法的理解。这项研究表明,心理社会研究需要新的结果衡量标准,积极心理学和社会健康的概念可以指导创新和结果衡量。