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 dementia.

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

Who will participate in this study?

At study entry, all participants are primary caregivers of family members with any type of degenerative dementia.

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 approximately 30-45 minutes (uninterrupted) each time. Skill-building sessions typically last about an hour, and 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 estimates vary per group, as the timelines are slightly different (see “What does participation in the study involve?”).

Total time estimate for Group 1 = 25-36 hours total over 8 months

Total time estimate for Group 2 = 29-40 hours total over 10 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 wifi!

1. One-on-one skill-building sessions 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 a steady wifi internet connection.

2. The longer study surveys can be done on any computer (but not the tablet). The Daily Emotion Survey can be done either on the tablet, or any computer.

3. The home practice activities are ideally done at home, in the evenings, but can be done from anywhere. The study will supply you with a workbook to record your home practice.

How many people will take part in this study?

Approximately 170 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 UCSF 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 UCSF.

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]) or principle investigator of the study: Dr. Glenna Dowling (415-502-7791 or [email protected])