What happens to the information collected for this research?

We are using information in this study to see if our app program is helpful for families. Your information like the answers you give on surveys are kept private. They are only reported in summary. Summary means that we combine information from all of the families in the study to share about what happened. Your name will not be used in any summaries.

How is a family’s privacy protected?
Your interviews/surveys are given an ID number so your name is not linked to the answers. All information is kept private. It is stored on secure servers. Staff doing phone or zoom interviews are trained to protect your privacy.

Our research is also covered by a Certificate of Confidentiality from the National Institutes of Health. This means that the researchers cannot release or use information, documents, or samples that may identify you in any action or suit unless you say it is okay. They also cannot provide them as evidence unless you have agreed.  This protection includes federal, state, or local civil, criminal, administrative, legislative, or other proceedings. An example would be a court subpoena.

There are some important things that you need to know.  The Certificate DOES NOT stop sharing information with government agencies if it is required by law. Some examples are laws that require reporting of child or elder abuse, and threats to harm yourself or others. 

Are the people working on this study mandatory reporters?

Our research team includes people who are mandatory reporters. A mandatory reporter is a person who has a job where they are required to inform a government agency if there is concern about the abuse or neglect of children or the elderly. If the research team is worried about abuse or neglect, they may have to inform a government agency because that is Oregon State Law.  When they inform the government agency about abuse or neglect, they may have to share private information.  

What does it look like to inform a government agency?

If a parent mentioned something that sounded like abuse or neglect to one of our study team members, the team member would ask more questions to make sure they understand. Our study staff would be honest. They would tell a parent if something needed to be reported and everything the staff planned to say in the report. When a mandatory reporter informs a government agency, they usually call a phone number like the Child Abuse Hotline and pass on the information.

Can I be reported for an answer to a survey question in this study?

Answers to questions asked in the surveys are not reportable. If you complete the survey as an interview and share extra information, the staff member may need to ask more questions to make sure they understand. If extra information is shared about abuse or neglect, the staff member may need to inform a government agency.

If I get to work with a family coach, will they be looking to catch me doing something wrong?

Our family coaches have been trained to see the great things you are doing with your family. We also understand that it can be hard to talk about parenting. If you work with a family coach, you may have conversations about things like substance use. Talking about using substances is not reportable unless parents share that they are using in a way that sounds like it might be dangerous for their child. If that came up, our coaches would ask more questions to make sure they understand. They would also be honest with you. If they needed to inform a government agency, they would tell you exactly what they planned to say. We want to make sure you know that when you are in a research study, you can choose not to answer questions. You can stop at any time. You can also choose what you want to tell your family coach.