Zorggroep Maas & Waal, Beneden-Leeuwen, The Netherlands.
Radboud university medical center, Radboud Institute for Health Sciences, Department of Primary and Community Care, Nijmegen, The Netherlands.
Inquiry. 2021 Jan-Dec;58:469580211028181. doi: 10.1177/00469580211028181.
Communication problems with their caregivers are common in people with dementia. Although interventions for improvement of communication are being developed, a tool to measure how participants experience their communication is lacking. The objective of this article is to describe the development of a questionnaire that measures the "experienced communication" of persons with dementia (ECD-P) as well as of their caregivers (ECD-C). Interviews were conducted with five person with dementia-caregiver dyads who had recently received a new communication intervention. Reflexive thematic analysis was performed on the transcripts using ATLAS.ti. Codes were created, categories and themes were identified, and items for the questionnaires were generated. Selection of items and response scales was done in collaboration with the same dyads. The final version was established after pilot testing with seven other dyads and discussion with five experts in the field of dementia care. Analysis of the transcripts resulted in 212 codes and 17 categories within four themes: caregiver competence, social communication, communication difficulties in daily life, and experienced emotions during conversations. The final version of the ECD-P consists of part 1 with 22 items and 4-point Likert scales, and part 2 with two items and 1 to 10 scales. In the final ECD-C (proxy version), part 1 and part 2 are similar to the ECD-P, while a part 3 was added to assess caregivers' own perspective and emotions (five items). Based on the experiences of people with dementia and their caregivers, we constructed a face-valid questionnaire. This justifies future research to test its clinimetric characteristics.
与照护者沟通不畅是痴呆患者的常见问题。尽管正在开发改善沟通的干预措施，但缺乏衡量参与者沟通体验的工具。本文的目的是描述一种用于测量痴呆症患者（ECD-P）及其照护者（ECD-C）沟通体验的问卷的开发过程。对最近接受新沟通干预的五对痴呆症患者和照护者进行了访谈。使用 ATLAS.ti 对转录本进行了反思性主题分析。对转录本进行了代码创建、类别和主题识别，并生成了问卷的项目。项目和反应量表的选择是与同一对参与者共同完成的。在对另外七对参与者进行试点测试并与五名痴呆症护理领域的专家进行讨论后，确定了最终版本。分析转录本产生了 212 个代码和 17 个类别，分为四个主题：照护者能力、社交沟通、日常生活中的沟通困难和对话中的情感体验。ECD-P 的最终版本包括第 1 部分，共 22 个项目和 4 点李克特量表，第 2 部分有 2 个项目和 1 到 10 个量表。在最终的 ECD-C（代理版本）中，第 1 部分和第 2 部分与 ECD-P 相似，而第 3 部分则用于评估照护者自身的观点和情感（5 个项目）。基于痴呆症患者及其照护者的经验，我们构建了一个具有表面有效性的问卷。这为未来测试其临床特征的研究提供了依据。
