School of Medical and Health Sciences, Bangor University, Bangor, UK.
Faculty of Education and Professional Studies, School of Social Work, Nipissing University, North Bay, ON, Canada.
J Patient Rep Outcomes. 2023 Sep 27;7(1):96. doi: 10.1186/s41687-023-00638-z.
Policies to support people living with dementia increasingly focus on strengths-based approaches, highlighting the importance of building resilience. This research responds to the lack of a suitable resilience measure for people with dementia. It develops a pool of items to inform a new measure of resilience for this population.
A conceptual model and associated data informed the item generation of the draft resilience measure. Regular meetings with professionals (n = 7) discussed response-scale formatting, content and face validity, leading to refinement and item reduction. Cognitive interviews with people living with dementia (n = 11) then examined the face and content validity of items and the suitability of response-scale formatting. These two phases informed subsequent revision and further item reduction of the resilience measure.
The first item generation exercise led to 140 items. These were independently assessed by the professionals and this refinement reduced the measure to 63 items across 7 domains of the conceptual model (psychological strengths; practical approaches for adapting to life with dementia; continuing with hobbies, interests and activities; strong relationships with family and friends; peer support and education; participating in community activities; the role of professional support services). Cognitive interviews explored the 63 items with people living with dementia. Detailed feedback led to items removed due to difficulty with (a) understanding (N = 7); (b) answering (n = 11); (c) low preference for that item (n = 6); and (d) presence of a preferred item within a cluster of similar questions (n = 4). Items were amended to enhance clarity/conciseness (n = 19) leading to a final 37-item pool.
Established methods for measurement development included the expertise of people with dementia and led to the generation of a set of items for a new resilience measure that were understandable and acceptable to this target population. This 37-item pool reflects the conceptual understanding of resilience in dementia as being derived across individual, community and societal level resources.
支持痴呆症患者的政策越来越关注基于优势的方法，强调建立韧性的重要性。这项研究针对缺乏适合痴呆症患者的韧性衡量标准的问题，开发了一套项目来为这一人群提供新的韧性衡量标准。
概念模型和相关数据为草案韧性衡量标准的项目生成提供了信息。与专业人员（n=7）定期举行会议，讨论反应尺度格式、内容和表面有效性，从而进行改进和项目缩减。随后，对痴呆症患者（n=11）进行认知访谈，以检验项目的表面和内容有效性以及反应尺度格式的适宜性。这两个阶段为韧性衡量标准的后续修订和进一步项目缩减提供了信息。
第一次项目生成练习产生了 140 个项目。这些项目由专业人员独立评估，通过这种细化，将衡量标准缩减至概念模型的 7 个领域中的 63 个项目（心理优势；适应痴呆症生活的实用方法；继续爱好、兴趣和活动；与家人和朋友的牢固关系；同伴支持和教育；参与社区活动；专业支持服务的作用）。认知访谈探讨了 63 项与痴呆症患者有关的项目。详细的反馈导致因以下原因而删除的项目：（a）理解困难（n=7）；（b）回答困难（n=11）；（c）对该项目的偏好较低（n=6）；以及（d）在类似问题的集群中存在首选项目（n=4）。为了提高清晰度/简洁性，对项目进行了修订（n=19），最终得到了 37 项项目池。
既定的衡量标准开发方法包括痴呆症患者的专业知识，并为新的韧性衡量标准生成了一套可理解且可被目标人群接受的项目。这个 37 项项目池反映了在痴呆症中，韧性的概念理解是源自个人、社区和社会层面的资源。
