NICU Language, Everyday Ethics, and Giving Better News: Optimizing Discussions about Disability with Families.

NICU ableism disability ethics neurodevelopmental outcomes

Journal

Children (Basel, Switzerland)
ISSN: 2227-9067
Titre abrégé: Children (Basel)
Pays: Switzerland
ID NLM: 101648936

Informations de publication

Date de publication:
15 Feb 2024
Historique:
received: 17 01 2024
revised: 01 02 2024
accepted: 08 02 2024
medline: 24 2 2024
pubmed: 24 2 2024
entrez: 24 2 2024
Statut: epublish

Résumé

The Neonatal Intensive Care Unit (NICU) has a language and culture that is its own. For professionals, it is a place of intense and constant attention to microdetails and cautious optimism. For parents, it is a foreign place with a new and unique language and culture. It is also the setting in which they are introduced to their child and parenthood for this child. This combination has been referred to as an emotional cauldron. The neonatal ethics literature mainly examines complex ethical dilemmas about withholding/drawing life sustaining interventions for fragile children. Rarely are everyday ethics or mundane ethics discussed. Microethics describe the mundane, discrete moments that occur between patients/families and clinicians. A key piece of these microethics is the language used to discuss patient care. Perception of prognoses, particularly around long-term neurodevelopmental outcome, is shaped with the language used. Despite this, clinicians in the NICU often have no specific training in the long-term neurodevelopment outcomes that they discuss. This paper focuses on the microethics of language used to discuss long-term neurodevelopmental outcomes, the developmental neuroscience behind language processing, and offers recommendations for more accurate and improved communication around long-term outcomes with families with critically ill neonates.

Identifiants

pubmed: 38397354
pii: children11020242
doi: 10.3390/children11020242
pii:
doi:

Types de publication

Journal Article

Langues

eng

Subventions

Organisme : US Department of Health and Human Services
ID : UA6MC32492

Auteurs

Paige Terrien Church (PT)

Beth Israel Deaconess Medical Center, Boston, MA 02215, USA.

Maya Dahan (M)

Sunnybrook Health Sciences Centre, Toronto, ON M4N 3M5, Canada.

Amy Rule (A)

Children's Healthcare of Atlanta, Atlanta, GA 30342, USA.

Annie Janvier (A)

CHU Sainte-Justine, Montreal, QC H3T 1C5, Canada.

Jane E Stewart (JE)

Beth Israel Deaconess Medical Center, Boston, MA 02215, USA.

John S Maypole (JS)

Boston Medical Center, Boston, MA 02118, USA.

Darcy Fehlings (D)

Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON M4G 1R8, Canada.

Jonathan S Litt (JS)

Beth Israel Deaconess Medical Center, Boston, MA 02215, USA.

Rudaina Banihani (R)

Sunnybrook Health Sciences Centre, Toronto, ON M4N 3M5, Canada.

Classifications MeSH