The impact of a child's inborn error of metabolism: the parents' perspectives on restrictions, discrimination, family planning, and emergency management.

Tanjana Harings Martina Patrizia Neininger Simone Eisenhofer Alena Gerlinde Thiele Wieland Kiess Astrid Bertsche Thilo Bertsche Skadi Beblo

Published in: Orphanet journal of rare diseases (2024)

From the parents' perspective, the intensity of restrictions increased with the severity of the child's IEM. The study shows the high impact of IEM on parents of children with IEM and the daily challenges they face. These findings emphasize the importance of comprehensive support for parents of children with IEM.

Keyphrases

young adults
mental health
emergency department
public health
healthcare
physical activity
high intensity