FAQ

Frequently Asked Questions

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Why is this study being done?

This study is being done to see if a behavioral program that teaches positive emotion skills will benefit family caregivers of people with Alzheimer's Disease.

Many caregivers experience physical and emotional changes as a result of their caregiving. Research shows that increasing one’s levels of positive emotion can lower stress and increase the ability to cope with existing stress. We are interested in the effects of applying these techniques with family caregivers.

Who is conducting this study?

Dr. Judith Moskowitz, PhD, MPH, of Northwestern University and Dr. Glenna Dowling, RN, PhD, FAAN of UCSF are Co-Principal Investigators on this study.

Who will participate in this study?

At study entry, all participants are primary caregivers of family members diagnosed with Alzheimer's Disease.

One aim of LEAF is to make this type of intervention available to caregivers anywhere they are, so even participants in rural settings may participate as long as they have dependable access to wifi internet.

What does participation in the study involve?

How much time will be required to participate in the study?

Surveys take up to 60 minutes each time. Skill-building video sessions typically last about an hour, and self-guided lessons take less. Time spent on home practice activities is estimated between 10 and 30 minutes per evening during the 6-week sessions portion of the study.

Total time estimate = Approximately 18 hours total over 13 months

Where does the study take place?

Because the study activities take place solely via computer, phone, and videoconferencing, caregivers can participate from anywhere in the country that has reliable wifi.

1. One-on-one skill-building sessions (if you are chosen for Group 1) are delivered via videoconferencing on small, study-supplied tablet computers. The sessions can be done in your home, a friend or family member’s home, or anywhere quiet and private that has a steady wifi internet connection.

2. Online lessons (Group 2), home practice and study surveys can be performed on the tablet or any computer.

3. (Group 3 will randomly cross into Group 1 or Group 2 later in the study - see timelines above.)

How many people will take part in this study?

Approximately 500 caregivers will take part in the LEAF Study.

Can I stop being in the study?

Yes. Research is always voluntary – you can decide to stop being in the study at any time you wish.

Also, the study researcher may ask you to stop taking part in this study at any time if he believes it is in your best interest or if the study is stopped.

What side effects or risks can I expect from being in the study?

There are no known risks to taking part in this study. In the surveys and in the sessions, you will asked about your emotions, which can be uncomfortable for some stressed individuals. You are free to decline to answer any question you wish.

Are there benefits to taking part in the study?

There is no guaranteed benefit to taking part in the study. It is the hope of the researchers that you will benefit from the skills provided in the skill-building sessions, and that they may help you better cope with the stresses of caregiving.

Your participation will also be helping the researchers learn more about the stresses of caregiving and how caregivers respond to learning and practicing the LEAF skills.

What other choices do I have if I do not take part in the study?

You are free to choose not to participate in this study. If you decide not to take part in this study, there will be no penalty to you.

Will my information be kept private?

Participation in research always carries some risk of loss of privacy. However, the researchers will do everything possible to keep your information private.

Skill-building sessions are recorded for quality assurance and training purposes only. Recordings are stored on a secure server and will be deleted when the study is concluded.

Other participant information is kept on secure servers and/or locked file cabinets in a locked office. Only the study team has access to these records.

What are the costs of taking part in this study?

There is no cost to you to participate in LEAF.

Will I be paid for taking part in this study?

You will not be paid for participation in the study. You will be sent a tablet computer that will remain study property until your participation in the study is concluded. If you choose to complete all activities, surveys and skill-building sessions outlined in this consent document, you will be allowed to keep the tablet after the study for your personal use. If you end your participation in the study before all activities, surveys and skill-building sessions are completed, you will be asked to return the tablet to the study.

Who can answer my questions about the study?

You can talk to the researchers about any questions, concerns, or complaints you have about this study. Contact the study coordinator Kari Snowberg (415-514-2935 or [email protected])