VoiceMyChoice: Enabling Persons with Dementia to Express Preferences

VoiceMyChoice：让痴呆症患者能够表达偏好

• 批准号: 8393336
• 负责人: Cameron J Camp
• 金额: $ 14.96万
• 依托单位: LINDA AND CAMERON, INC.
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-08-01 至 2013-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8393336
• 关键词: Address; Advance Directives; Agreement; Alzheimer' s Disease; Asians; Audiotape; Automobile Driving; Caregivers; Caring; Categories; Communication; Control Groups; Cues; Dementia; Development; Discipline of Nursing; Ethnic Origin; Family Caregiver; Feasibility Studies; Food; Funding; Hispanics; Label; Language; Lead; Life; Long-Term Care; Marketing; Measures; Muslim population group; Nurses; Nurses' Aides; Nursing Homes; Nursing Staff; Outcome Measure; Pain; Participant; Persons; Phase; Procedures; Public Health; Quality of life; Questionnaire Designs; Questionnaires; Recruitment Activity; Research; Solutions; Sorting - Cell Movement; Time; Translating; Videotape; Visual; Writing; advanced dementia; clinical application; design; end of life; follower of religion Jewish; improved; member; person centered; preference; primary outcome; prototype; response; tool; verbal conditioning

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.

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改进的许多努力，是基于提供护理的人了解和理解痴呆症患者愿望的能力。在患有痴呆症的人无法或不愿意口头表达他们的偏好或选择的情况下，PCC存在挑战。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和家庭护理人员表达他们的选择。Michelle Bourgeois博士和她的同事最近的研究表明，使这种沟通成为可能的程序和材料有可能被改编，以引起痴呆症患者对一系列生活质量指标的反应（例如，疼痛等级、食物和活动偏好、预先指令、生命结束选择）。本第1阶段可行性研究的目的是通过创建VoiceMyChoice”原型来建立本研究，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居民谈论QoL主题。此外，将创建一份旨在评估与长期护理中痴呆患者相关的QoL问题的偏好问卷，用作主要结局指标。此外，为了解决与痴呆症患者种族差异相关的PCC问题，将在第2阶段为西班牙裔、亚裔、犹太人和穆斯林居民开发补充材料。在基线时，研究人员将对60名助理护士-住院医师二人组的成员进行偏好问卷的口头管理。接下来，实验组护理助理（30名）将使用“语音我的选择”提示住院医师将标记的图片提示卡（QoL主题的特定示例）分类到评级类别中10分钟，然后将偏好问卷重新施用于二人组成员。对照组护士助理（30）将与住院医师进行10分钟的纸牌游戏，在控制条件之前和之后进行偏好问卷调查。据推测，NA居民的二人组成员之间的收敛将增加从前测到后测的偏好问卷项目的二人组在VoiceMyChoice”的条件相比，控制条件的二人组的反应。此外，每个二元组将在7天后重复这些相同的程序，以检查在每个条件下表达的偏好的一致性，以及二元组中的NA和居民之间的趋同性是否在“语音我的选择”条件下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。还假设，与控制条件相比，在“语音我的选择”条件下，非英语母语的NAs将随着时间的推移显示出与居民的响应更好的收敛。 公共卫生相关性：提高痴呆症护理质量需要护理人员了解和理解痴呆症患者的愿望。因此，当痴呆症患者无法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。这一项目与公共卫生有关，因为它将导致制定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者表达其愿望、需求和偏好的能力。