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Twitter Based Social Support for Hispanic and Black Dementia Caregivers (Tweet-S2)

Primary Purpose

Loneliness, Emotional Stress

Status
Active
Phase
Not Applicable
Locations
United States
Study Type
Interventional
Intervention
Twitter for Hispanic caregivers
Twitter for African American caregivers
Sponsored by
Columbia University
About
Eligibility
Locations
Arms
Outcomes
Full info

About this trial

This is an interventional supportive care trial for Loneliness focused on measuring Family Caregivers, Dementia

Eligibility Criteria

18 Years - undefined (Adult, Older Adult)All SexesAccepts Healthy Volunteers

Inclusion Criteria:

  • 18 years of age or older
  • Black or Hispanic, living in the U.S. including the U.S. territories
  • a dementia caregiver with any duration, able to speak English or Spanish/bilingual
  • must agree to terms of conditions of use and privacy policy and rules of one of the two dementia caregiver network (Hispanic @dcnh, Black @dcnaab), the Twitter user agreement of the terms of service, Twitter privacy policy and Twitter rules including intellectual property, violence, misconduct, abuse behavior, private information and spam and security
  • use a smartphone or a feature phone (i.e., a cell phone with text messaging)

Exclusion Criteria:

  • do not have de-identified Twitter account, children, not a dementia family caregiver

Sites / Locations

  • Columbia University Irving Medical Center

Arms of the Study

Arm 1

Arm 2

Arm Type

Experimental

Experimental

Arm Label

Hispanic dementia caregivers

African American dementia caregivers

Arm Description

De-identified followers of our Hispanic dementia caregiver Twitter network will receive messages from the network (Twitter for Hispanic caregivers' intervention).

De-identified followers of our African American dementia caregiver Twitter network will receive messages from the network (Twitter for African American caregivers' intervention).

Outcomes

Primary Outcome Measures

Fraction of isolates
% of the people who do not engage Twitter activities (i.e., retweet, reply, like, post) within the Twitter network for dementia caregivers: macro-level. 0% indicates no social isolates and 100% indicates all users with no Twitter activities.
Emotional valence score
Emotional valence (macro level) detected from text data (e.g., "This is so helpful" - emotion score +4, "I am sad"- emotion score -6). Emotional valence score ranges from -10 to +10; -10 indicates negative valence (bad) and +10 indicates positive valence (good).

Secondary Outcome Measures

Number of auto-detected small groups
Meso level: number of small group automatically detected based on Twitter activities (i.e., retweet); for example 0 means no small-group activity detected, 7 small groups mean seven distinct cliques/grouping activities detected where the users are communicating, supporting and responding within our Twitter network.
Number of individual posting activities with balanced communication type
Micro level: balanced communication triad, 2 or 3 people responding and communicating with equal or similar frequency; 0 reflects non-optimal communication indicating domination, avoidance or ignorance. 8 means there are 8 triads who maintain healthy communication.

Full Information

First Posted
March 4, 2019
Last Updated
June 29, 2023
Sponsor
Columbia University
Collaborators
Department of Health and Human Services, National Institute on Aging (NIA)
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1. Study Identification

Unique Protocol Identification Number
NCT03865498
Brief Title
Twitter Based Social Support for Hispanic and Black Dementia Caregivers
Acronym
Tweet-S2
Official Title
Using Twitter to Enhance the Social Support of Hispanic and Black Dementia Caregivers
Study Type
Interventional

2. Study Status

Record Verification Date
June 2023
Overall Recruitment Status
Active, not recruiting
Study Start Date
January 12, 2022 (Actual)
Primary Completion Date
October 31, 2023 (Anticipated)
Study Completion Date
October 31, 2023 (Anticipated)

3. Sponsor/Collaborators

Responsible Party, by Official Title
Principal Investigator
Name of the Sponsor
Columbia University
Collaborators
Department of Health and Human Services, National Institute on Aging (NIA)

4. Oversight

Studies a U.S. FDA-regulated Drug Product
No
Studies a U.S. FDA-regulated Device Product
No
Data Monitoring Committee
No

5. Study Description

Brief Summary
The prevalence of dementia is higher in Hispanics and African Americans than non-Hispanic Whites. Moreover, dementia caregivers often experience loneliness as well decreased health status. The expansion of social media use among Hispanics and African Americans, particularly Twitter - a short message service - offers great promise for improving social support. This study aims to evaluate changes of discussion topics, sentiment and networking styles (i.e., number of followers) among anonymous followers of our two Twitter networks; the African American/Black dementia caregiver group and the Hispanic dementia caregiver group.
Detailed Description
The study will utilize Twitter networks to post a daily message for dementia caregivers for a year, and set up a monthly group chat.

6. Conditions and Keywords

Primary Disease or Condition Being Studied in the Trial, or the Focus of the Study
Loneliness, Emotional Stress
Keywords
Family Caregivers, Dementia

7. Study Design

Primary Purpose
Supportive Care
Study Phase
Not Applicable
Interventional Study Model
Parallel Assignment
Masking
None (Open Label)
Allocation
Non-Randomized
Enrollment
966 (Actual)

8. Arms, Groups, and Interventions

Arm Title
Hispanic dementia caregivers
Arm Type
Experimental
Arm Description
De-identified followers of our Hispanic dementia caregiver Twitter network will receive messages from the network (Twitter for Hispanic caregivers' intervention).
Arm Title
African American dementia caregivers
Arm Type
Experimental
Arm Description
De-identified followers of our African American dementia caregiver Twitter network will receive messages from the network (Twitter for African American caregivers' intervention).
Intervention Type
Behavioral
Intervention Name(s)
Twitter for Hispanic caregivers
Intervention Description
This group will be asked to follow and use (i.e., retweet, reply, like) our Hispanic Twitter network for social support
Intervention Type
Behavioral
Intervention Name(s)
Twitter for African American caregivers
Intervention Description
This group will be asked to follow and use (i.e., retweet, reply, like) our African American Twitter network for social support.
Primary Outcome Measure Information:
Title
Fraction of isolates
Description
% of the people who do not engage Twitter activities (i.e., retweet, reply, like, post) within the Twitter network for dementia caregivers: macro-level. 0% indicates no social isolates and 100% indicates all users with no Twitter activities.
Time Frame
12 months
Title
Emotional valence score
Description
Emotional valence (macro level) detected from text data (e.g., "This is so helpful" - emotion score +4, "I am sad"- emotion score -6). Emotional valence score ranges from -10 to +10; -10 indicates negative valence (bad) and +10 indicates positive valence (good).
Time Frame
12 months
Secondary Outcome Measure Information:
Title
Number of auto-detected small groups
Description
Meso level: number of small group automatically detected based on Twitter activities (i.e., retweet); for example 0 means no small-group activity detected, 7 small groups mean seven distinct cliques/grouping activities detected where the users are communicating, supporting and responding within our Twitter network.
Time Frame
12 months
Title
Number of individual posting activities with balanced communication type
Description
Micro level: balanced communication triad, 2 or 3 people responding and communicating with equal or similar frequency; 0 reflects non-optimal communication indicating domination, avoidance or ignorance. 8 means there are 8 triads who maintain healthy communication.
Time Frame
12 months

10. Eligibility

Sex
All
Minimum Age & Unit of Time
18 Years
Accepts Healthy Volunteers
Accepts Healthy Volunteers
Eligibility Criteria
Inclusion Criteria: 18 years of age or older Black or Hispanic, living in the U.S. including the U.S. territories a dementia caregiver with any duration, able to speak English or Spanish/bilingual must agree to terms of conditions of use and privacy policy and rules of one of the two dementia caregiver network (Hispanic @dcnh, Black @dcnaab), the Twitter user agreement of the terms of service, Twitter privacy policy and Twitter rules including intellectual property, violence, misconduct, abuse behavior, private information and spam and security use a smartphone or a feature phone (i.e., a cell phone with text messaging) Exclusion Criteria: do not have de-identified Twitter account, children, not a dementia family caregiver
Overall Study Officials:
First Name & Middle Initial & Last Name & Degree
Sunmoo Yoon, PhD
Organizational Affiliation
Associate Research Scientist in the Department of Medicine
Official's Role
Principal Investigator
Facility Information:
Facility Name
Columbia University Irving Medical Center
City
New York
State/Province
New York
ZIP/Postal Code
10032
Country
United States

12. IPD Sharing Statement

Plan to Share IPD
No

Learn more about this trial

Twitter Based Social Support for Hispanic and Black Dementia Caregivers

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