A series of six interprofessional palliative care meetings used narrative, with participants sharing stories from their professional experience in facilitated small groups. The course was attended by doctors, nurses, social workers and emergency care practitioners. The course was evaluated by telephone interview with 19 of the 28 participants. Respondents reported effects including changed behaviours and benefit to patients. The use of narrative, as a starting point for shared learning, discussion and evaluation is unusual. Five months after the end of the course, many participants described changed professional behaviour which they believed led to improved patient outcomes.
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http://dx.doi.org/10.3109/13561820.2010.515427 | DOI Listing |
Genet Med Open
April 2024
UCSF Bioethics, University of California, San Francisco, CA.
Purpose: Sharing aggregate results with research participants is a widely agreed-upon ethical obligation; yet, there is little research on communicating study results to diverse populations enrolled in genomics research. This article describes the cocreation of a visual narrative to explain research findings to families enrolled in a clinical genomics research study.
Methods: The design process involved researchers, clinicians, study participants, a physician illustrator, and a health communications expert.
Health Aff (Millwood)
January 2025
Bakhtawar Ahmad is a postdoctoral research scholar at the University of Florida, in Gainesville, Florida. The patient's name and certain identifying details have been changed in this essay to protect their privacy. The author is very grateful to the patients' families that allowed for sharing of their stories. She is also very grateful to Carolina Maciel, Katharina Busl, and Daniela Pomar-Forero at the University of Florida for their valuable review of and feedback on the article. She acknowledges the Gorman family for their support of the research endeavors at the University of Florida. To access the author's disclosures, click on the Details tab of the article online.
A disturbing encounter causes a new doctor to question the integrity of the informed consent process in a hospital abroad.
View Article and Find Full Text PDFSex Reprod Health Matters
January 2025
Professor, Bioethics Institute Ghent; Department of Philosophy and Moral Sciences, Ghent University, Ghent, Belgium.
Abortion is an indispensable healthcare service for women of all reproductive ages. Research on abortion is often focused on younger women, neglecting those who are closer to the end of their reproductive lifespan. This study presents findings from qualitative interviews with Belgian women who had an abortion at the age of 40 or older, conducted between May 2022 and April 2023.
View Article and Find Full Text PDFJMIR Hum Factors
December 2024
Center for Bioethics, Indiana University School of Medicine, Indianapolis, IN, United States.
Background: The rarity that is inherent in rare disease (RD) often means that patients and parents of children with RDs feel uniquely isolated and therefore are unprepared or unsupported in their care. To overcome this isolation, many within the RD community turn to the internet, and social media groups in particular, to gather useful information about their RDs. While previous research has shown that social media support groups are helpful for those affected by RDs, it is unclear what these groups are particularly useful or helpful for patients and parents of children with RDs.
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