Equality in Caregiving: Facilitating Caregiver Mastery Among LGBT Caregivers of PLWD

NCT04394260 | Completed

• 3 other identifiers: STUDY00002246IRB001132645P30AG064200-02
• Study Type: observational
• Target: 10
• Locations: 1 country
• Sites: 1

Brief Summary

The goal of this study is to adapt existing Savvy Caregiving Program (SCP) for lesbian, gay, bisexual, transgender (LGBT) caregivers of person living with dementia (PLWD). After watching the SCP Remote Learning videos, participants will attend a focus group to discuss how the program could be changed to meet the specific needs of LGBT caregivers of PLWD.

Conditions

Dementia; Caregiver Burnout

Keywords

Person Living with Dementia (PLWD); Lesbian, Gay, Bisexual, Transgender (LGBT); Informal caregiver; Savvy Caregiving Program; Alzheimer's Disease (AD); Alzheimer's Disease and Related Dementias (ADRD)

Outcome Measures

Primary Outcomes (1)

• Development of SCP for LGBT Caregivers of PLWD

  A version of the SCP will be developed to meet the needs of LGBT Caregivers of PLWD through focus groups discussing the SCP after participants watch all of the videos. Semi-structured discussions in the focus group will include, but not be limited to the following questions: 1) Can you tell me about your role as a caregiver? 2) What did you like about the SCP, and what could be improved? 3) How relevant to your situation as an LGBT caregiver were the course materials? 4) How well did the questionnaire reflect your experiences with discrimination due to sexual orientation and/or gender identity? 5) What are some of the additional caregiver challenges that should be considered in these questionnaires?

  Day of Focus Group (Day 1)

Study Arms (1)

LGBT Caregivers Participating in a Focus Group

LGBT caregivers attending a focus group after watching the videos of the remote learning Savvy Caregiver Program. The focus group will guide modification of the Savvy Caregiver Program to meet the needs of LGBT caregivers of PLWD.

Behavioral: Savvy Caregiver Program via Remote Learning; Behavioral: Focus group

Interventions

Savvy Caregiver Program via Remote Learning BEHAVIORAL

The SCP program is comprised of four pre-recorded Savvy Caregiver videos (each 1 hour and 45 minutes in length). Course material was designed to provide informal caregivers with the knowledge, skills, and attitude needed to carry out their role as a caregiver for a person living with dementia (PLWD). Course learning objectives include: 1) introduction to dementing disorder; 2) caregiver self-care; 3) the anchors of enjoyable involvement; 4) levels of thinking and performance; 5) strengthening the family as a resource for caregiving; and 6) review and integration of the previous sections.

Also known as: Savvy Caregiver Program provided via Pre-Recorded Video

LGBT Caregivers Participating in a Focus Group

Focus group BEHAVIORAL

After watching the Savvy Caregiver videos participants will take part in a focus group to discuss their experience with the SCP and how the course material applies to them as a LGBT caregiver. The semi-structured discussion will include, but not be limited to the following questions: 1) Can you tell me about your role as a caregiver? (Probes: living situation, experiences, challenges). 2) What went well with the SCP, and what could be improved? 3) How relevant to your situation as an LGBT caregiver were the course materials? 4) How well did the questionnaire reflect your experiences with discrimination due to sexual orientation and/or gender identity? (Probe about when working with your care recipient's health care providers, in-home aides/visiting nurses, adult day care staff, respite, etc? 5) What are some of the additional caregiver challenges that should be considered in these questionnaires? (Probes: mental health, physical health, and social life strain, Quality of life, stress).

LGBT Caregivers Participating in a Focus Group

Eligibility Criteria

• Age: 18 Years+
• Gender Eligibility Details: Self-identification as a LGBT adult
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Lesbian, gay, bisexual, transgender (LGBT) caregivers of person living with dementia (PLWD)

You may qualify if:

• Self-identification as an LGBT adult (18 yrs and over)
• Providing informal care to a community dwelling adult family member or friend for at least 3 months OR
• Was formerly providing informal care to a community dwelling adult family member or friend for at least 6 months no more than 5 years ago
• Willing to participate in a one hour survey
• Agree to participate in up to 12 hours of clinical trial activities, including up to 6 hours of videos

You may not qualify if:

• Any significant diagnosed systemic illness or unstable diagnosed medical condition that could affect cognition (i.e. MCI), cause difficulty complying with the protocol or consenting for study procedures

Sponsors & Collaborators

• Emory University: lead
• National Institute on Aging (NIA): collaborator

Study Sites (1)

Emory Goizueta Alzheimer's Disease Research Center (ADRC)

Atlanta, Georgia, 30322, United States

Location

MeSH Terms

Conditions

Dementia; Caregiver Burden; Homosexuality, Female; Homosexuality; Bisexuality; Alzheimer Disease

Interventions

Focus Groups

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Mental Disorders; Stress, Psychological; Behavioral Symptoms; Behavior; Sexuality; Sexual Behavior; Tauopathies; Neurodegenerative Diseases

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Whitney Wharton, PhD

  Emory University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate Professor

Study Record Dates

• First Submitted: May 15, 2020
• First Posted: May 19, 2020
• Study Start: May 20, 2021
• Primary Completion: February 14, 2022
• Study Completion: February 14, 2022
• Last Updated: March 10, 2023

Record last verified: 2023-03

Data Sharing

• IPD Sharing: Will share
• Shared Documents: ICF
• Time Frame: Immediately following publication with no end date
• Access Criteria: Researchers who provide a methodologically sound proposal to achieve aims in the approved proposal will get access. Proposals should be directed to (w.wharton@emory.edu). To gain access, data requestors will need to sign a data access agreement. Data will then be shared directly via csv or excel file.

Locations

US (1)