Clinical trial NCT05877391: Intervention to Collect and Utilize Sexual Orientation and Gender Identity (SOGI) Information in Hospice
Official title: 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)
Study type: INTERVENTIONAL
Overall status: RECRUITING
Phase: NA
Conditions: Sexual and Gender Minorities
Hospice
Alzheimer's Disease and Related Dementias
Lead sponsor: University of Colorado, Denver
Sponsor class: OTHER
First posted: 2023-05-26
Enrollment: 80
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Allocation: NA
Intervention model: SINGLE_GROUP
Primary purpose: HEALTH_SERVICES_RESEARCH

Brief summary: 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: 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.

Eligibility criteria: 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.

Primary outcomes:
measure: Barriers and facilitators to communicating with SGM older adults and perceptions and preferences for asking/disclosing SOGI
timeFrame: Years 1-2
measure: Content of training
timeFrame: Years 2-3
measure: Delivery of content
timeFrame: Year 3-4
measure: Feasibility and assessment of training
timeFrame: Year 5
Secondary outcomes:
measure: Sources of bias and stigma
timeFrame: Years 1-2
measure: Ongoing engagement around SOGI-informed care
timeFrame: Years 2-3
measure: Accessibility
timeFrame: Years 3-5
Other outcomes:
Locations:
city: Aurora
country: United States
facility: University of Colorado
state: Colorado
Study officials:
References: