Palliative Care Education in Assisted Living (PCEAL) Lab

FAQ for Family & Residents

Study Information

Who is leading this study?

  • Dr. Debra Dobbs, a professor at the School of Aging Studies, Â鶹ÃÛÌÒAV.

Where is this study being conducted?

  • In 30 assisted living facilities, including the one where your resident being asked to participate resides.

Who are the eligible participants?

  • Residents with dementia who are not currently receiving hospice care.
  • The goal is to have 450 residents in the study.

Who is supporting and sponsoring this study?

  • The National Institute on Aging, which is part of the National Institutes of Health.

What is the purpose of the study?

  1. To understand family members’ perceptions of care for residents with dementia.
  2. To help train assisted living community staff to have conversations about advance care planning.

Who can you contact with questions or concerns?

  • For questions about the study, contact Dr. Debra Dobbs at 813-396-9177 or palliativecare@usf.edu.
  • For questions about your rights as a participant, contact the Â鶹ÃÛÌÒAV IRB at (813) 974-5638 or RSCH-IRB@usf.edu.

Information for Family Members

Why are you being asked to participate?

  • Because you are a legally authorized representative of a resident with dementia who lives in an assisted living community and does not currently receive hospice services.

Is participation mandatory?

  • No, participation is voluntary.
  • You can stop participating at any time without penalties or loss of benefits.
  • The care your family member receives will not be affected by your decision to participate or not.

What would you have to do?

  • Sign consents for the resident and yourself to be included in the study.
  • Answer 2 surveys (6 months apart) about your involvement in and satisfaction of care the resident is receiving.
  • Is there a cost to participate?
  • No, there is no cost.

Are there any incentives for participating?

  • Yes, if you complete both surveys, then you will receive a $30 Amazon gift card.

Information Pertaining to the Residents

Will the residents know they are in the study?

  • Because the residents have dementia, only the legally authorized representative/family member can consent to be included in the study.
  • However, if a family member consents for the study and the resident has mild dementia, then we are required to get their assent to be included in the study.
  • If the residents do not assent, then they cannot be included in the study.

How might being in the study impact the resident?

  • Other than the assent for residents with mild dementia, there is no involvement required of the residents.
  • A (research study nurse) will visit the assisted living community and review information from the resident’s chart.