A novel intervention to improve care for older sexual and gender minority (SGM) adults with serious illness and especially those with Alzheimer’s Disease and Related Dementias (ADRD)

一种新的干预措施，旨在改善对患有严重疾病的老年性和性别少数 (SGM) 成年人，特别是患有阿尔茨海默氏病和相关痴呆症 (ADRD) 的老年人的护理

• 批准号: 10700800
• 负责人: Carey B Candrian
• 金额: $ 13.36万
• 依托单位: UNIVERSITY OF COLORADO DENVER
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-15 至 2027-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10700800
• 关键词: Accident and Emergency department; Activities of Daily Living; Address; Adult; Affect; Aging; Alzheimer' s disease patient; Alzheimer' s disease related dementia; Attention; Back; Behavior; Bioethics Consultants; Caregivers; Caring; Child; Clinical; Clinical Trials; Colorado; Communication; Communities; Data; Data Collection; Diagnosis; Disclosure; Discrimination; Disease; Education; Educational Intervention; Educational process of instructing; Elderly; Enrollment; Environment; Ethics; Evaluation; Failure; Family; Focus Groups; Fostering; Foundations; Fright; Future; Gender Identity; Goals; Grief reaction; Guidelines; Health; Home; Hospitals; Inequity; Intervention; Intervention Trial; K-Series Research Career Programs; Medical; Mentors; Methods; Nurses; Outcome; Patients; Perception; Persons; Play; Policies; Positioning Attribute; Process; Recommendation; Reduce health disparities; Reporting; Research; Research Personnel; Respondent; Risk; Role; Sex Orientation; Sexual and Gender Minorities; Source; Statistical Methods; Stress; Structure; Support System; Surveys; Testing; Training; Training Activity; Universities; Verbally abusive behavior; Work; acceptability and feasibility; advanced disease; behavior change; bullying; care delivery; communication behavior; design; end of life; end of life care; experience; gender minority community; gender minority group; health care disparity; health communication; health disparity; high risk; hospice environment; improved; informal caregiver; informal support; insight; intersectionality; medical schools; member; minority patient; novel; participant enrollment; perceived discrimination; person centered; physical abuse; pilot test; preference; professor; satisfaction; shared decision making; social stigma; therapy development; virtual

Project Summary/Abstract: Collecting representative and inclusive data about sexual orientation and gender identity (SOGI) is a critical component of combating the devastating health disparities affecting sexual and gender minority (SGM) older adults. This is particularly crucial for patients living with ADRD, which is widely regarded as a family disease requiring the active caregiver involvement, particularly with advanced disease. Failure to collect and integrate SOGI data to identify patients’ informal support systems may have adverse health consequences for SGM older adults, particularly for those dependent on informal caregivers to provide in-home support and assist with activities of daily living. Improper identification of chosen family and caregivers contributes to incomplete care delivery and disenfranchised grief. Given the historical discrimination experienced by older SGM people, adding SOGI questions without proper training has the potential to harm patients and create staff discomfort rather than foster inclusive interactions. For this career development award, I propose to characterize SOGI data collection challenges from patients and caregivers enrolling in hospice while exploring understudied intersections, such as SGM people living with ADRD, and how they affect staff approaches to delivering person-centered care. These insights will be used to develop and pilot test an intervention to train hospice interdisciplinary team (IDT) staff to sensitively collect and utilize SOGI data to improve communication with SGM patients and caregivers. Candidate, Mentors and Proposed Training: I am an Assistant Professor at the University of Colorado School of Medicine. My long-term goal is to become a leader in communication aging research to reduce health disparities by affecting change for SGM older adults via more effective, personcentered communication. This work will harness my background as a communication health researcher, my previous research with hospices and older SGM communities including those living with ADRD, and my lived experience as a SGM person. Research Plan: My research aims to: 1) characterize barriers and facilitators to communicating with SGM patients and caregivers who have a serious illness, with a special emphasis on those with ADRD; 2) develop an educational intervention for hospice IDT members to improve communication with older SGM patients; and 3) pilot test a novel communication training intervention for feasibility and acceptability of behavior change to engage in meaningful dialogue. My training goals include developing additional expertise in: 1) statistical methods for testing hypotheses and evaluating clinical trial interventions; 2) community-based stakeholder engagement and bioethical intervention development; and 3) clinical trials and intervention development and evaluation. This K01 is critical to my becoming an independent leader in SGM aging research. Implication: This project will not only inform how to improve SOGI data collection but will contribute to communication behavior change to facilitate meaningful dialogue with SGM older adults, including those with ADRD, and their caregivers around the end of life.

项目摘要/摘要：收集有关性的代表性和包容性数据 取向和性别认同（SOGI）是抗击毁灭性灾难的重要组成部分 影响性别少数（SGM）老年人的健康差异尤其如此。 对于患有 ADRD 的患者来说至关重要，ADRD 被广泛认为是一种需要治疗的家庭疾病 护理人员积极参与，特别是对于晚期疾病。 未能收集和整合。 用于识别患者非正式支持系统的 SOGI 数据可能对健康不利 对 SGM 老年人的影响，尤其是那些依赖非正式护理人员照顾的老年人 提供家庭支持并协助日常生活活动的识别。 选择的家庭和护理人员会导致护理服务不完整和被剥夺悲伤的权利。 鉴于SGM年长人士所经历的历史歧视，添加SOGI问题 如果没有适当的培训，可能会伤害患者并造成工作人员的不适，而不是 对于这个职业发展奖，我建议以 SOGI 为特征。 参与临终关怀的患者和护理人员在探索过程中面临的数据收集挑战 未充分研究的交叉点，例如患有 ADRD 的 SGM 人，以及它们如何影响员工 这些见解将用于开发和试点提供以人为本的护理。 测试干预措施，培训临终关怀跨学科团队 (IDT) 工作人员敏感地收集和 SOGI 数据可改善与 SGM 患者和护理人员的沟通， 导师和拟议的培训：我是科罗拉多大学的助理教授 我的长期目标是成为通讯老化研究的领导者。 通过更有效、以人为本的沟通来影响 SGM 老年人的改变，从而减少健康差距 这项工作将利用我作为沟通健康方面的背景。 研究员，我之前对临终关怀中心和老年 SGM 社区进行的研究，包括那些 患有 ADRD 的生活，以及我作为 SGM 人的生活经历 研究计划：我的研究目标。 1) 描述与 SGM 患者和护理人员沟通的障碍和促进因素 患有严重疾病的人，特别是患有 ADRD 的人 2) 发展 对临终关怀 IDT 成员进行教育干预，以改善与老年 SGM 的沟通 患者；3) 试点测试一种新型沟通训练干预措施的可行性和 我的培训目标包括接受行为改变以进行有意义的对话。 发展以下方面的额外专业知识：1）测试假设和评估的统计方法 临床试验干预；2) 基于社区的利益相关者参与和生物伦理学 干预措施的开发；3) 临床试验以及干预措施的开发和评估。 这台 K01 对我成为 SGM 衰老研究的独立领导者至关重要。 该项目不仅将告知如何改进 SOGI 数据收集，还将有助于 改变沟通行为，促进与SGM长者进行有意义的对话， 包括 ADRD 患者及其临终关怀者。