CaringBridge research

1 Who are you?

We are technical researchers at the University of Minnesota teaming up with CaringBridge to study user behaviors and improve user experience.

2 What is the study about?

CaringBridge offers patients and caregivers compassitionate ways to write and share their health journeys and get support. We want to understand if writing journal entries has any influence on authors’ health and validate a quantitative measure of if a journal entry is expressive writing (i.e., writing deepest thoughts and feelings about stressful events).

3 Who are eligible for the study?

You must be a primary author or a co-author of a CaringBridge site for yourself or someone else, have posted at least one journal entry on a CaringBridge site in the prior seven days, and be 18 or older.

4 How long will the recruitment be open?

We will keep running the recruitment until we reach the needed number of participants, so you are able to participate in the study at a later time, if you still can see the CaringBridge banner.

5 What is required of me if I decide to participate?

The study lasts for 31 days and has three parts. The first part is a pre-study survey that you need to complete after you sign the consent form and HIPAA (Health Insurance Portability and Accountability Act) authorization form. In the pre-study survey, you will be asked for demographic and health-related information. Demographic information include age, gender, language you speak most often, education, income, and race. We collect this information because these demographic factors may influence health. Health-related information include mental health scales, social health scales, and physical health scales that capture different aspects of health. In addition, you will be asked to provide your CaringBridge site (site name and url) and your preferred contact method. The student investigator, Haiwei Ma (email: maxxx979@umn.edu, phone: 651-239-6957), will follow your CaringBridge site and send you surveys or other study-related information via SMS or email based on your preference. Your journal entries posted before and during the study period will be collected for text analysis in order to validate a quantitative measure of if a journal entry is expressive writing and understand the linguistic markers of authors’ health changes. The pre-study survey will take 15-20 minutes and its completion date is the beginning date of your participation. The second part includes multiple self-evaluation surveys of your journal entries posted during the study period. Each time you post a new journal entry, you will immediately receive a survey via SMS or email asking you to rate the journal entry. The self-evaluation survey will only take 1 minute each and we need you to complete it within 24 hours when your feelings, thoughts, and memories are still fresh. The number of self-evaluation surveys you will receive is the same number of journal entries you posted during the study period. The last part is a post-study survey that will be sent to you via SMS or email on the last day of the study. The survey asks you again about your mental, social, and physical health. We need both pre-study and post-study surveys to measure health changes. The post-study survey will take 10-15 minutes. After completing it, you will receive instructions via SMS or email on how to get compensation for the study and how to subscribe to study results.

6 Can I leave the study if I do not want to continue?

Of course! You can leave the study at any time you want by responding to the text messages or emails you receive with a message to indicate you want to leave.

7 What if I miss a survey?

Depending on the type of the survey you miss, there will be different consequences. For the pre-study survey, the 31-day study period only starts after you complete the pre-study survey. The recruitment banner and the pre-study survey will be inactive after we reach the needed number of participants. You are not able to participate in the study after the pre-study survey expires. For the self-evaluation surveys of journal entries you posted during the study period, it is fine if you miss one or two. Nonetheless, your inputs on these self-evaluation surveys are really important to our study and we encourage you to complete them within 24 hours when your thoughts and feelings are still fresh. For the post-study survey, you will receive it on the last day of the study period and the completion of this survey marks the completion of the study. Only after completing this survey, can you receive the compensation. We will send you weekly reminders to complete this survey. If we do not receive your response within the next month, you will be regarded as leaving the study.

8 Will my information be safe and secure?

All your survey responses including your site information, contact information, signatures, demographic information, and health-related information will be stored in REDCap in compliance with HIPAA (Health Insurance Portability and Accountability Act) standards.. All your journal entries (text data) will be stored in MSI (Minnesota Supercomputing Institute) servers. Both REDCap and MSI servers are provided and maintained by the University of Minnesota to securely store user data. Only researchers at the U and CaringBridge staff who are part of this collaborative study have access to the data. Your data will first be de-identified (with identifiable information removed) before downloading for data analysis.

9 Are there any risks to participation?

The primary risk may be difficult or challenging emotions that arise during the course of writing journal entries and answering survey questions.

10 What results will my participation yield?

Your valued input will result in a publication in a research conference and you can opt in to receive an email notification about study results in a lay-accessible blog post after you complete the study.

11 Is there any compensation for my participation?

After completing the study (i.e., completing the post-study survey), you will receive instructions via SMS or email on how to get the compensation. The compensation will be $15 and you can choose to receive it via an Amazon digital gift card or Venmo. You should receive your compensation within minutes once you enter your email or Venmo username. There will be no compensation if you do not complete the study.

12 What if I do not want to receive the compensation?

You can ignore the message you receive regarding compensation or you can make a tribute donation to CaringBridge to help its’ running. Here’s a link to donate to CaringBridge [Link of Donation].