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Palliative care research

"it can be hard but it's not bad": Three questions to solicit caregiver perceptions of benefits and burdens to participating in pediatric palliative care research

Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential. Design: In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3.

Fri, 07/29/2022 - 17:43

Family Caregiver Participation in Palliative Care Research: Challenging the Myth

Context. Despite international guidelines emphasizing consumer-directed care and autonomous decisions in research participation, there is a common myth that research can be an additional and unwanted burden on patients and their family members. Objectives. To examine the experiences and impact of research involvement on family caregivers (FCs) of terminally ill people, focusing within home-based palliative care. Methods.

Fri, 03/22/2019 - 16:12