Understanding Participation in End-of-Life Research
Author Information
Author(s): Wallace Cara, Wladkowski Stephanie, Juboori Ruaa Al, Wingo Anna, Hyde Rebecca
Primary Institution: Saint Louis University
Hypothesis
What motivates patients and families to participate in end-of-life research?
Conclusion
Many participants in end-of-life research reported greater benefits than burdens, finding value in their participation.
Supporting Evidence
- Participants reported greater benefits than burdens in research participation.
- Participation provided an additional outlet for support.
- Individuals felt a socioemotional altruistic benefit from participation.
Takeaway
People who are very sick and their families can find it helpful to join research studies, even if it feels hard sometimes.
Methodology
A scoping review was conducted by searching multiple databases for studies published between 2015 and 2024.
Limitations
The review is limited to studies published in specific databases and may not capture all relevant research.
Participant Demographics
Participants included patients with terminal illnesses and their families/caregivers.
Digital Object Identifier (DOI)
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