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| ID | Type | Description | Link |
|---|---|---|---|
| R01AG060929-01 | U.S. NIH Grant/Contract | View source |
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| Name | Class |
|---|---|
| Department of Health and Human Services | FED |
| National Institute on Aging (NIA) | NIH |
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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.
The study will utilize Twitter networks to post a daily message for dementia caregivers for a year, and set up a monthly group chat.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Hispanic dementia caregivers | Experimental | De-identified followers of our Hispanic dementia caregiver Twitter network will receive messages from the network (Twitter for Hispanic caregivers' intervention). |
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| African American dementia caregivers | Experimental | De-identified followers of our African American dementia caregiver Twitter network will receive messages from the network (Twitter for African American caregivers' intervention). |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Twitter for Hispanic caregivers | Behavioral | This group will be asked to follow and use (i.e., retweet, reply, like) our Hispanic Twitter network for social support |
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| Measure | Description | Time Frame |
|---|---|---|
| Number of Participants Who do Not Engage in Twitter Activities | Macro level: The number of participants who do not engage in Twitter activities (i.e., retweet, reply, like, post) within the Twitter network for dementia caregivers | 12 months |
| 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 and +10 indicates positive valence. | 12 months |
| Measure | Description | Time Frame |
|---|---|---|
| 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. | 12 months |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Sunmoo Yoon, PhD | Associate Research Scientist in the Department of Medicine | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Columbia University Irving Medical Center | New York | New York | 10032 | United States |
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Participants were recruited based on flyer distribution via community outreach offline (10 brain and Alzheimer's disease community events, community outreach) and online (Twitter advertisement, emails to 920+ community leaders) between January 2022 and June 2023. The first participant was enrolled on January 12, 2022, and the last was enrolled on June 14, 2023.
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| ID | Title | Description |
|---|---|---|
| FG000 | African American Family Members of Persons With Alzheimer's Disease and Related Dementias | Participants in the African American caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023. Message ingredient: an evidence-based social support Tweet message tailored to African American family members of persons with ADRD [dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds] |
| FG001 | Hispanic Family Members of Persons With Alzheimer's Disease and Related Dementias | Participants in the Hispanic caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023. Message ingredient: an evidence-based social support Tweet message tailored to Hispanic family members of persons with ADRD [dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds] |
| Title | Milestones | Reasons Not Completed | ||||||||||||||||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Overall Study |
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| ID | Title | Description |
|---|---|---|
| BG000 | African American Family Members of Persons With Alzheimer's Disease and Related Dementias | African American caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023. Ingredient: an evidence-based social support Tweet message tailored to African American family members of persons with ADRD [dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds] |
| Units | Counts |
|---|---|
| Participants |
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| Title | Description | Population Description | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Denominator Units Selected | Denominators | Classes |
|---|---|---|---|---|---|---|---|---|---|
| Age, Continuous | Mean |
| Type | Title | Description | Population Description | Reporting Status | Anticipated Posting Date | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Time Frame | Units Analyzed | Denominator Units Selected | Arm/Group Information | Denominators | Classes | Analyses | |||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Primary | Number of Participants Who do Not Engage in Twitter Activities | Macro level: The number of participants who do not engage in Twitter activities (i.e., retweet, reply, like, post) within the Twitter network for dementia caregivers | Posted | Count of Participants | Participants | 12 months |
|
1 year
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| ID | Title | Description | Deaths (Affected) | Deaths (At Risk) | Serious Events (Affected) | Serious Events (At Risk) | Other Events (Affected) | Other Events (At Risk) |
|---|---|---|---|---|---|---|---|---|
| EG000 | African American Family Members of Persons With Alzheimer's Disease and Related Dementias | African American caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023. Ingredient: an evidence-based social support Tweet message tailored to African American family members of persons with ADRD [dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds] |
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| Title | Organization | Phone | Extension | |
|---|---|---|---|---|
| Sunmoo Yoon | Columbia University | +1 212 300 7081 | sy2102@cumc.columbia.edu |
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| Type | Includes Protocol | Includes SAP | Includes ICF | Document Label | Document Date | Document Uploaded Date | Document File Name |
|---|---|---|---|---|---|---|---|
| Prot_SAP | Yes | Yes | No | Study Protocol and Statistical Analysis Plan | Sep 13, 2021 | Nov 22, 2024 | Prot_SAP_000.pdf |
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| ID | Term |
|---|---|
| D013315 | Stress, Psychological |
| D003704 | Dementia |
| ID | Term |
|---|---|
| D001526 | Behavioral Symptoms |
| D001519 | Behavior |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
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| Twitter for African American caregivers | Behavioral | This group will be asked to follow and use (i.e., retweet, reply, like) our African American Twitter network for social support. |
|
| Percentage of Balanced Triads | 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. | 12 months |
| Withdrawal by Subject |
|
| BG001 | Hispanic Family Members of Persons With Alzheimer's Disease and Related Dementias | Hispanic caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023. Ingredient: an evidence-based social support Tweet message tailored to Hispanic family members of persons with ADRD [dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds] |
| BG002 | Total | Total of all reporting groups |
| years |
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| Sex/Gender, Customized | Count of Participants | Participants |
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| Ethnicity (NIH/OMB) | Count of Participants | Participants |
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| Race (NIH/OMB) | Count of Participants | Participants |
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| Region of Enrollment | Number | participants |
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| Number of participants who do not engage in Twitter activities | Count of Participants | Participants |
|
| 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 and +10 indicates positive valence. | Mean | Standard Deviation | score on a scale |
|
| OG001 | Hispanic Family Members of Persons With Alzheimer's Disease and Related Dementias | Hispanic caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023. Ingredient: an evidence-based social support Tweet message tailored to Hispanic family members of persons with ADRD [dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds] |
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|
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| Primary | 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 and +10 indicates positive valence. | Posted | Mean | Standard Deviation | score on a scale | 12 months |
|
|
|
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| Secondary | 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. | Posted | Number | Auto-detected Small Groups | 12 months |
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| Secondary | Percentage of Balanced Triads | 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. | Triad census: Counts of each triad type within a network are determined by analyzing all possible combinations of connections of 16 possible communication styles among three nodes (a triad) in each conversation. | Posted | Number | percentage of balanced triads | 12 months | Triads | Triads |
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| 0 |
| 506 |
| 0 |
| 506 |
| 0 |
| 506 |
| EG001 | Hispanic Family Members of Persons With Alzheimer's Disease and Related Dementias | Hispanic caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023. Ingredient: an evidence-based social support Tweet message tailored to Hispanic family members of persons with ADRD [dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds] | 0 | 460 | 0 | 460 | 0 | 460 |
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| D009422 |
| Nervous System Diseases |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
Hypothesis: There will be significant pre/post-intervention differences in emotional valence score detected from Tweets for Hispanic dementia caregiver networks. |
| a paired t-test |
| <0.0001 |
| Mean Difference (Final Values) |
| 1.410 |
| 2-Sided |
| 95 |
| 1.189 |
| 1.631 |
| Superiority |
Pre-post mean difference |
| There will be no significant differences in emotional valence score detected from Tweets between Hispanic and African American dementia caregiver networks. | t-test, 2 sided | 0.600 | Mean Difference (Final Values) | 0.039 | 2-Sided | 95 | -0.186 | 0.107 | Superiority |