VoiceMyChoice: Enabling Persons with Dementia to Express Preferences

描述(由申请人提供)：以人为中心的护理(PCC)的概念，推动了痴呆症护理质量改进的大部分努力，是基于提供护理的人了解和理解痴呆症患者的愿望的能力。在痴呆症患者不能或不愿意口头表达他们的偏好或选择的情况下，PCC面临着挑战。反过来，这可能会对个人的生活质量(QOL)产生严重和有害的影响。因此，需要有效的工具，使痴呆症患者能够更有效地向专业和家庭照顾者表达他们的选择。米歇尔·布尔乔亚博士和她的同事最近的研究表明，实现这种沟通的程序和材料有可能被修改，以引起痴呆症患者对一系列生活质量指标(例如，疼痛评级、食物和活动偏好、提前指示、生命结束选择)的反应。这项第一阶段可行性研究的目的是通过创建VoiceMyChoice的原型来加强这项研究，该原型将包括提示卡(带有书面标签的图片)，供照顾者口头提示住院医生谈论QOL主题。此外，将创建一份偏好问卷，以评估与长期护理中的痴呆症患者相关的生活质量问题，作为主要结果衡量标准。此外，为了解决与痴呆症患者的种族差异有关的PCC问题，将在第二阶段为西班牙裔、亚洲人、犹太人和穆斯林居民编制补充材料。在基线水平，60名护士助理住院医生的成员将由研究人员口头回答偏好问卷。接下来，实验组护理员(30)将使用VoiceMyChoice提示居民将标记的图片提示卡(QOL主题的特定样本)分类到评级类别中，持续10分钟，然后向DYAD成员重新发放偏好问卷。对照组护士助理(30)将让住院医生参与10分钟的纸牌游戏，并在控制条件前后进行偏好问卷调查。假设与控制条件二联体的回答相比，在语音我的选择条件下，NA-常驻双联体成员之间的偏爱问卷项目的前后测之间的收敛将增加。此外，每个双联体将在7天后重复相同的程序，以检查在每个条件下表达的偏好的一致性，以及在语音我的选择条件下，NAS和双联体中的居民之间的趋同性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者。研究还假设，与对照条件相比，非英语母语的Nas在VoiceMyChoice条件下会随着时间的推移表现出与居民反应的更好的趋同。 公共卫生相关性：提高痴呆症护理的质量要求照顾者了解和理解痴呆症患者的愿望。因此，当痴呆症患者不能或不愿意口头表达他们的偏好或选择时，这是具有挑战性的。该项目与公共卫生有关，因为它将导致开发可获得和有效的材料和程序，以提高越来越多的痴呆症患者向提供护理的人表达他们的愿望、需要和偏好的能力。

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.