Intervention to Collect and Utilize Sexual Orientation and Gender Identity (SOGI) Information in Hospice

Study Overview
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Brief Summary
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Older sexual and gender minority (SGM) patients are at risk for receiving inequitable end-of-life care; those with Alzheimer's disease and related dementias (ADRD) are at particularly high risk. Failure to collect and integrate sexual orientation and gender identity (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. The goal of this K01 is develop a novel training for hospice staff in person-centered communication that includes SOGI data collection to promote authentic end-of-life care for SGM patients and their caregivers.

Detailed Description
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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.

Official Title
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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)

Conditions
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Sexual and Gender Minorities, Hospice, Alzheimer's Disease and Related Dementias

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: English speaking 18 years and above Exclusion Criteria: --People under 18, pregnant women, prisoners, and people who are decisionally challenged will be excluded from the study.

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Barriers and facilitators to communicating with SGM older adults and perceptions and preferences for asking/disclosing SOGI | Evaluating barriers and facilitators to creating an affirming environment where SGM patients and their caregiver feel included and safe to disclose; perceptions and preferences for asking for/disclosing SOGI. | Years 1-2 | 
| Content of training | Iteratively develop content areas with a focus on facilitating conversations with patients who are different than you. | Years 2-3 | 
| Delivery of content | Determine acceptable, replicable, and scalability of content. | Year 3-4 | 
| Feasibility | Evaluate feasibility of training intervention through simulation with standardized patients and hospice staff pilot test the training to refine the content and delivery of the training and assess feasibility a the training. | Year 5 | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Sources of bias and stigma | Identify sources of stigma (anticipated, internalized, and experienced) and sources of bias (e.g. community, hospice staff, culture, policies). | Years 1-2 | 
| Ongoing engagement around SOGI-informed care | Evaluate means for ongoing engagement of the SGM community for ongoing, authentic, training delivery. | Years 2-3 | 
| Accessibility | Evaluate accessibility of training intervention ussing simulation with standardized patients and hospice staff, pilot test the training to refine the content and delivery of the training and assess accessibility and satisfaction with training. | Years 3-5 |