Palliative Care Education in Assisted Living (PCEAL) Lab

FAQ for AL Admini & Staff

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 communities in Florida, including yours.

Who are the eligible participants?

  • Residents with dementia not currently receiving hospice care.
  • The goal is to have 450 residents in the study.
  • 72 staff in assisted living.

Who is supporting and sponsoring this study?

  • The National Institute on Aging, which is part of the National Institute of Health.
  • What will happen if your assisted living community takes part in this study?
  • Your assisted living community may be assigned to the intervention or control groups.
  • If in the intervention group, the PCEAL-DCP program will be provided as part of the study:
  • The program includes 4 in-person sessions, once weekly for 1.5 hours.
  • A 2-month post-intervention follow-up session with a palliative care champion.
  • If in the control group, the PCEAL-DCP program will be available after the study completion.

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 Administrators

Why are you being asked to participate?

  • You are an administrator/director of an assisted living community.

What would you have to do?

  • Sign a consent for the assisted living community to be included in the study.
  • Complete a facility questionnaire at baseline and 6 months.

Is participation mandatory?

  • No, participation is voluntary.
  • You can stop participating at any time without penalties or loss of benefits.

Will you receive any benefits from participating?

  • Potential benefits include increased knowledge about palliative and hospice care, decreased job-related stress, increased job satisfaction, and decreased levels of sadness and grief.
  • An assisted living community that participated in the study will have continued access to PCEAL-DCP educational materials after study completion.

Is there a cost to participate?

  • No, there is no cost.

Will you be compensated?

  • No compensation for completing the administrative survey.
  • However, administrators are eligible to complete the 4 1.5-hour training sessions for the 6 Continuing Education credits.
  • If the administrator completes the training sessions, then they would receive the Amazon gift card

What are the risks?

  • The research is considered minimal risk, similar to everyday risks.
  • Questions about care practices may lead to changes in your care practices.

Will your information be kept private?

  • Information collected during the study will be kept private and confidential.
  • Certain people, including the research team and government officials, may need to see your study records for oversight purposes.
  • Aggregated, de-identified data will be shared with the National Institute on Aging.
  • Your name and your employer’s name will not be included in any publications.

Information for Staff

Why are you being asked to participate?

  • Because you are a nurse of residents with dementia in an assisted living community that has agreed to participate.

What would you have to do?

  • Sign a consent to be included in the study.
  • Complete 4 questionnaires at baseline, 1 month, 3 months, and 6 months.
  • Attend the PCEAL-DCP program sessions if in the intervention group, which is 4 weekly 1.5 hour sessions.

Do you have to participate in this study?

  • No, participation is voluntary.
  • You can choose not to participate or withdraw at any time without affecting your job status.

What are the potential benefits of participating?

  • Increased knowledge and confidence about providing palliative and hospice care.
  • Decreased job-related stress and burnout.
  • Increased job satisfaction.
  • Decreased levels of sadness and grief when caring for residents with dementia.

Will it cost you anything to participate?

  • No, there are no costs to participate.

Will you be compensated for participating?

  • 6 Continuing Education credits for completing all 4 of the 1.5-hour education sessions.
  • Staff in the intervention group will receive a $40 Amazon gift card and staff in the control group will receive a $25 Amazon gift card.
  • The palliative care champion nurse will receive an additional $20 Amazon gift card.

What are the risks of participating?

  • The research is considered minimal risk, similar to everyday risks.
  • Questions about care practices may lead to changes in your care practices.

How will your privacy be protected?

  • Information collected during the study will be kept private and confidential.
  • Certain people, including the research team and government officials, may need to see your study records for oversight purposes.
  • Aggregated, de-identified data will be shared with the National Institute on Aging.
  • Your name and your employer’s name will not be included in any publications.

What if new information becomes available during the study?

  • You will be notified if new information that could affect your decision to participate becomes available.