Medicine and Health Sciences Commons^™

Psychosocial Considerations For The Child With Rare Disease: A Review With Recommendations And Calls To Action., Leslee Belzer, Margaret Wright, Emily J. Goodwin, Mehar N. Singh, Brian S. Carter

Manuscripts, Articles, Book Chapters and Other Papers

Rare diseases (RD) affect children, adolescents, and their families infrequently, but with a significant impact. The diagnostic odyssey undertaken as part of having a child with RD is immense and carries with it practical, emotional, relational, and contextual issues that are not well understood. Children with RD often have chronic and complex medical conditions requiring a complicated milieu of care by numerous clinical caregivers. They may feel isolated and may feel stigmas in settings of education, employment, and the workplace, or a lack a social support or understanding. Some parents report facing similar loneliness amidst a veritable medicalization of their …

Everyday Ethics And Equity At The Bedside, Shika Kalevor, Angie Knackstedt

Research Days

Background: Traditional bioethics training, although important, may not be completely suited to the nursing role. In contrast to traditional clinical ethics, which focuses on healthcare dilemmas, everyday ethics focuses on routine clinical encounters between clinicians, patients, and families and may be better suited to help nurses address issues such as bias and racism at the bedside.

Objectives/Goal: This study aims to provide a data-backed approach to ethics education for nurses as it pertains to improvements in the understanding of Diversity, Equity, & Inclusion (DEI) efforts in healthcare. This study also provides an opportunity for the field of bioethics to provide …