Table 1 Nine considerations that caregivers rated the importance of in their reasons for either participating or not participating in the hypothetical dementia clinical trial. Responses were collected on a 4-point likert scale (e.g., not at all important, not very important, somewhat important, very important)
Reasons for either participating or not participating in the clinical trial | |
|---|---|
Clinical benefit for the care recipient | “There is a chance that your care recipient will get the drug and it could help them” |
Social responsibility to participate in research | “We all have some responsibility to help others by volunteering for medical research” |
Community benefit | “Participating in this study could help people in your specific community, by showing whether the drug works for people like your care recipient” |
Caregiver support | “Participating in this study could help you take better care of your care recipient, by being connected to experts who can answer your questions” |
Distrust of the drug company | “You wouldn’t trust the company that makes this drug” |
Inconvenience | “It would be inconvenient to bring your care recipient to the research center each month” |
Placebo | “There is a 50% chance your care recipient will get the placebo” |
Side effects | “There is a chance your care recipient will have a serious side effect from the drug and will get hurt” |
Privacy | “You are not sure that your information and your care recipient’s information will be kept private and confidential” |