Benefits and Burdens of Research Participation: A Mixed Methods Systematic Review in Palliative and End-of-Life Care.
Cara L Wallace, Stephanie P Wladkowski, Ruaa Al-Juboori and 4 others
PMID 40845318WHAT IT FOUND
Most adults and families in palliative, end-of-life, or hospice research reported more benefits than burdens.
Benefits were meaning, extra care, and helping others; burdens were emotional, physical, and intellectual. Trusted clinicians influenced participation.
Key findings
01Participants reported greater benefits than burdens, and 23 of 28 included studies described both types.
02Benefits included extra care and attention, positive relationships with clinicians, improving care, and altruism.
03Burdens were grouped as emotional, physical, or intellectual.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
All included studies were rated very low or low evidence because they had small samples, one data-collection site, no control group, or descriptive, qualitative, or case-study designs. Many included studies were sub-studies or add-on inquiries to larger clinical trials. The review combined palliative care, end-of-life care, and bereavement care, so differences across that spectrum may be hidden. The paper reports 28 included studies but does not state the total number of patients or family caregivers.
Declared interests
No conflicts of interest were declared.
The easy way to misread this
Do not conclude that research participation is beneficial for every palliative or end-of-life patient. The review found more benefits than burdens, but every included study was rated very low or low quality, and participants still reported emotional, physical, and intellectual burdens.