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

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)

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.

Study Overview

• Status: Recruiting
• Conditions: Hospice; Alzheimer's Disease and Related Dementias; Sexual and Gender Minorities
• Intervention / Treatment: Behavioral: SGM Communication Intervention

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.

• Study Type: Interventional
• Enrollment (Estimated): 80
• Phase: Not Applicable

Contacts and Locations

• Study Contact: Name: Carey Candrian, PhD; Phone Number: 3037247892; Email: carey.candrian@cuanschutz.edu

Study Locations

• United States
  • Colorado
    • Aurora, Colorado, United States, 80045
      • Recruiting
      • University of Colorado
      • Contact: Carey Candrian, PhD

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: Yes

Study Population

The study population includes: 1) hospice and palliative care providers of all types-for and non-profit, large and small, rural and urban in the US, and 2) SGM older adults and SGM caregivers supporting those living with serious illness and especially those living with various dementia's such as Alzheimer's, Lewy Body and other memory loss and cognitive impairment diseases.

Description

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.

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Health Services Research
• Allocation: N/A
• Interventional Model: Single Group Assignment
• Masking: None (Open Label)

Number of Arms

1

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Other: SGM Communication Intervention; The goal of the arm is to train hospice staff in person-centered communication that includes SOGI data collection to promote authentic end-of-life care for SGM patients and their caregivers.	Behavioral: SGM Communication Intervention; Evaluate the feasibility and acceptability of the SGM communication intervention by hospice staff. I will pilot test the training with hospice staff to refine the content and delivery of the training. Outcomes in the pilot clinical trial will include feasibility, acceptability, and staff satisfaction with training.

What is the study measuring?

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 and assessment of training	Evaluate feasibility of training intervention through simulation with standardized patients and hospice staff. Including evaluating content and delivery of the training and assess delivery of training, feasibility, comfort and confidence the training, incorporation into practice, and evaluation of content.	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

Collaborators and Investigators

• Sponsor: University of Colorado, Denver

Study record dates

Study Major Dates

• Study Start (Actual): March 13, 2023
• Primary Completion (Estimated): September 1, 2027
• Study Completion (Estimated): September 1, 2027

Study Registration Dates

• First Submitted: March 30, 2023
• First Submitted That Met QC Criteria: May 24, 2023
• First Posted (Actual): May 26, 2023

Study Record Updates

• Last Update Posted (Actual): June 24, 2024
• Last Update Submitted That Met QC Criteria: June 18, 2024
• Last Verified: June 1, 2024

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Mental Disorders; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Neurodegenerative Diseases; Tauopathies; Dementia; Alzheimer Disease
• Other Study ID Numbers: 212337

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No