In this research study, you will be asked to help construct content and evaluate an online training module for caregivers. Participants will be asked to provide feedback on content and barriers for online delivery and usage, as well as engage in discussion of any suggestions to make the online tool culturally relevant to African-American family caregivers of people with dementia.
This can take place virtually using Zoom or Microsoft Teams, in person in a focus group setting, or personal interview.
If you agree to take part in this research study, you will be asked to
1. Complete a questionnaire that will provide us with demographic information such as your age, type of dementia of the person you are caring for, date dementia was diagnosed, time in your role as a caregiver, and resources used to assist with your role as caregiver. The time needed to complete the questionnaire will be at least 15-30 minutes.
2. Participate in an initial focus group or interview to help construct culturally relevant content to African American family caregivers of people with dementia. The time needed to complete the focus group or interview will last approximately 1-2 hours.
3. Participants will be asked to participate in follow up focus groups or interviews, and to complete usability questionnaires to help evaluate the online training module. The time needed to complete this follow up focus group or interview will last approximately 1-2 hours.
4. Participants will be asked to participate in up to 3-4 focus groups or interviews during the course of the study. Each subsequent focus group or interview will last approximately 1-2 hours for a total time commitment of approximately 4-8 hours.
5. The types of questions that will be asked will include the following:
a. What are the essential needs of a training program for African-American caregivers of people with dementia?
b. What are current needs and gaps in caregiver training or resources for African-American caregivers of people with dementia?
c. What features of the training module are most helpful?
d. What features of the training module were least helpful?
e. What features of the training module could be improved?
f. How user friendly is the training module?
g. How can the usability of the training module be improved or enhanced?
h. Would the training module meet your needs as an African American caregiver of a person with dementia?
6. Participants can choose to answer or not answer any of the provided questions and remain in the study.
7. There is minimal likelihood of a breach of identified data to occur. No personnel related to this study have ever had a breech in confidentiality throughout their history in research. All data will be stored in a secured location with the Co-PIs as the only personnel with access. The Co-PIs will enter date of enrollment, study ID, contact information, and baseline data into a subject Excel spreadsheet in order of enrollment. The subject Excel data file will be stored on the PI’s password-protected computer and will be destroyed according to HIPAA/IRB regulations. Signed informed consent documents will be stored in a notebook that will be locked in the PI’s office. Further, all data will be entered using a coded identifier rather than participant names. All identifiable subject information will be destroyed within 3 years, although this is more likely to be much sooner, from the study date according to IRB requirements.
Participants will receive a $100 gift card