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)

点击翻译按钮获取中文摘要

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.