VoiceMyChoice: Enabling Persons with Dementia to Express Preferences

描述（由申请人提供）：以人为本的护理（PCC）的概念，推动了痴呆症护理质量的提高，这是基于提供护理的人了解和理解痴呆症患者需求的能力。在痴呆症患者不能或不愿口头表达他们的偏好或选择的情况下，PCC面临挑战。这反过来又会对人的生活质量（QoL）产生关键和有害的影响。因此，需要有效的工具，使痴呆症患者能够更有效地向专业护理人员和家庭护理人员表达他们的选择。米歇尔·布尔乔亚博士和她的同事们最近的研究表明，能够进行这种交流的程序和材料有可能被用于激发痴呆症患者对一系列生活质量指标（例如，疼痛评分、食物和活动偏好、预先指示、生命终结选择）的反应。第一阶段可行性研究的目的是在此研究的基础上创建“VoiceMyChoice”的原型，该原型将包括提示卡（带有书面标签的图片），供护理人员口头提示住院医师谈论生活质量话题。此外，还将设计一份偏好问卷，以评估与长期护理的痴呆症患者相关的生活质量问题，作为主要的结果衡量标准。此外，为了解决与痴呆症患者的种族差异相关的PCC问题，将在第二阶段开发针对西班牙裔、亚裔、犹太人和穆斯林居民的补充材料。在基线时，60名护士助理和住院医师将由研究人员对偏好问卷进行口头管理。接下来，实验组护理助理（30名）将使用“VoiceMyChoice”提示住院医师将标记的图片提示卡（生活质量主题的特定示例）分类为评级类别，然后将偏好问卷重新管理给二人组成员。对照组护士助理（30名）将与住院患者进行10分钟的纸牌游戏，在控制条件之前和之后分别进行偏好问卷调查。假设在“VoiceMyChoice”条件下，与对照条件下的双元组相比，na -居民双元组成员在偏好问卷项目的前测到后测之间的趋同程度有所增加。此外，每个二组将在7天后重复这些相同的程序，以检查每种条件下表达偏好的一致性，以及在“VoiceMyChoice”条件下，二组NAs和居民之间的趋同是否随着时间的推移而增加。最后，在这两种情况下，一半（15）的护士助理将是非英语母语人士。我们还假设，在“VoiceMyChoice”条件下，与对照条件相比，非英语母语的NAs随着时间的推移与居民的反应会表现出更好的趋同。

DESCRIPTION (provided by applicant): The concept of Person Centered Care (PCC), driving much of the efforts for quality improvement in dementia care, is predicated on the ability of persons providing care to know and understand the desires of persons with dementia. A challenge exists for PCC in situations in which the person with dementia is unable or unwilling to express verbally their preferences or choices. This, in turn, can have a critical and detrimental impact on the person's Quality of Life (QoL). There is, therefore, a need for effective tools that enable persons with dementia to more effectively express their choices to professional and family caregivers. Recent research by Dr. Michelle Bourgeois and her colleagues reveals that procedures and materials to enable such communication have the potential to be adapted for eliciting responses from persons with dementia about a range of QoL indicators (e.g., pain ratings, food and activity preferences, advance directives, end of life choices). The purpose of this Phase 1 feasibility study is to build on this research by creating the prototype for VoiceMyChoice", which will include cue cards (pictures with written labels) for caregivers to verbally, prompt the resident to talk about QoL topics. In addition, a Preference Questionnaire designed to assess QoL issues relevant to persons with dementia living in long-term care will be created for use as a primary outcome measure. Additionally, to address PCC issues related to ethnicity differences of persons with dementia, supplemental materials for Hispanic, Asian, Jewish, and Muslim residents will be developed in Phase 2. At baseline, members of 60 nurse assistant-resident dyads will be given a verbal administration of the Preference Questionnaire by research staff. Next, experimental group nursing assistants (30) will use VoiceMyChoice" to prompt the resident to sort labeled picture cue cards (specific exemplars of QoL topics) into rating categories for 10 minutes, then the Preference Questionnaire will be re-administered to dyad members. Control group nurse assistants (30) will engage the resident in a card game for 10 minutes, with the Preference Questionnaire being administered before and after the control condition. It is hypothesized that convergence between members of NA-resident dyads will increase from pretest to posttest for Preference Questionnaire items for dyads in the VoiceMyChoice" condition compared to responses of Control Condition dyads. Also, each dyad will repeat these same procedures after 7 days to examine the consistency of expressed preferences in each condition, and whether convergence between NAs and residents in dyads increases over time in the VoiceMyChoice" condition. Finally, in each of the two conditions, half (15) of the nurse assistants will be non-native speakers of English. It also is hypothesized that non-native English speaking NAs will show better convergence with resident's responses over time in the VoiceMyChoice" condition compared to the control condition. PUBLIC HEALTH RELEVANCE: Improving the quality of dementia care requires that caregivers know and understand the desires of persons with dementia. It is, therefore, challenging when persons with dementia are unable or unwilling to verbally express their preferences or choices. This project is relevant to public health in that it will lead to the development of accessible and effective materials and procedures for improving the ability of a large and growing number of persons with dementia to express their wants, needs and preferences to those providing care.