Twitter Based Social Support for Hispanic and Black Dementia Caregivers

Study Overview
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Brief Summary
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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.

Detailed Description
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The study will utilize Twitter networks to post a daily message for dementia caregivers for a year, and set up a monthly group chat.

Official Title
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Using Twitter to Enhance the Social Support of Hispanic and Black Dementia Caregivers

Conditions
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Loneliness, Emotional Stress

Intervention / Treatment
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* Behavioral: Twitter for Hispanic caregivers
* Behavioral: Twitter for African American caregivers


Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Allocation: Non-Randomized
Intervention Model: Parallel Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Hispanic dementia caregivers<br>De-identified followers of our Hispanic dementia caregiver Twitter network will receive messages from the network (Twitter for Hispanic caregivers' intervention). | Behavioral: Twitter for Hispanic caregivers<br>* This group will be asked to follow and use (i.e., retweet, reply, like) our Hispanic Twitter network for social support<br>|
| Experimental: African American dementia caregivers<br>De-identified followers of our African American dementia caregiver Twitter network will receive messages from the network (Twitter for African American caregivers' intervention). | Behavioral: Twitter for African American caregivers<br>* This group will be asked to follow and use (i.e., retweet, reply, like) our African American Twitter network for social support.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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. | 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 (bad) and +10 indicates positive valence (good). | 12 months | 

Secondary Outcome Measures

| Outcome Measure | 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 | 
| 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. | 12 months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Family Caregivers, Dementia