RECRUITING

DECIDE: Dyads and Families

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

The purpose of this study is to design and test a decision-making program that is tailored to support adult daughters making healthcare decisions for their parents who are living with memory loss to improve the quality of life of African American families. There are two phases of this research study. The first phase will collect information by surveys and/or interviews. The surveys and interviews will ask questions about demographics (e.g., age, race/ethnicity), culture, health, family dynamics, caregiving, and healthcare experiences. The surveys will be completed by all eligible adult daughters and parents with memory loss in pairs. The interviews will be completed by a smaller number of pairs and by all former adult daughter caregivers. The general scope of topics is caregiving experiences, cultural identity, healthcare decisions for persons living with Alzheimer's disease, and related dementias, health, and well-being. The research team will identify and examine key factors that will lead to designing and testing the feasibility of a culturally tailored prototype intervention for African American dementia dyads/families of persons living with mild to moderate Alzheimer's disease and related dementias.

Official Title

Decision-Making Experiences for Culturally Inclusive Dementia Engagement: Dyads and Families (DECIDE: Dyads and Families)

Quick Facts

Study Start:2022-07-15
Study Completion:2026-12
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT05139290

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * self-identifies as African American
  2. * age 50 years or older
  3. * community-dwelling
  4. * experiencing signs and symptoms of mild to moderate dementia through family caregiver report on the Dementia Severity Rating Scale and meeting the National Institute on Aging and the Alzheimer's Association clinical criteria for probable (Alzheimer's Disease (AD)
  5. * able to read, speak, and understand English
  6. * willing to participate.
  1. * any confounding significant neurologic diseases (e.g., Parkinson's) or a major psychiatric disorder (e.g., schizophrenia).

Contacts and Locations

Study Contact

Kalisha Bonds Johnson, PhD RN PMHNP
CONTACT
404-727-5937
kbonds@emory.edu
Kenneth Hepburn
CONTACT
404.712.9286
khepbur@emory.edu

Principal Investigator

Kalisha Bonds Johnson, PhD RN PMHNP
PRINCIPAL_INVESTIGATOR
Emory University

Study Locations (Sites)

Zeta Phi Beta Sorority, Inc.
Washington, District of Columbia, 20009
United States
Emory Healthcare Integrated Memory Care Clinic
Atlanta, Georgia, 30329
United States
Emory University Goizueta Alzheimer's Disease Research Center Minority Engagement Core
Atlanta, Georgia, 30329
United States
Metro-Atlanta
Atlanta, Georgia, 30340
United States

Collaborators and Investigators

Sponsor: Emory University

  • Kalisha Bonds Johnson, PhD RN PMHNP, PRINCIPAL_INVESTIGATOR, Emory University

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2022-07-15
Study Completion Date2026-12

Study Record Updates

Study Start Date2022-07-15
Study Completion Date2026-12

Terms related to this study

Additional Relevant MeSH Terms

  • Dementia
  • Alzheimer Disease
  • Caregiver Burden