Meeting ethical challenges with authenticity when engaging patients and families in end-of-life and palliative care research: a qualitative study.

ABSTRACT:

Background

Delivering high quality, patient- and family-centered care depends upon high quality end-of-life and palliative care (EOLPC) research. Engaging patients and families as advisors, partners, or co-investigators throughout the research lifecycle is widely regarded as critical to ensuring high quality research. Engagement is not only an ethical obligation, it also raises ethical challenges of its own. We conducted a qualitative study to understand ethical challenges and potential solutions when engaging patients and families in EOLPC research.

Methods

We recruited and interviewed 20 clinical investigators and 22 patients or family caregivers through the Palliative Care Research Cooperative Group (PCRC). Interview transcripts were analyzed using constructivist grounded

SUBMITTER: DeCamp M 

PROVIDER: S-EPMC9108140 | biostudies-literature | 2022 May

REPOSITORIES: biostudies-literature