Emotional experience in parents of children with Zellweger spectrum disorders: A qualitative study

This study underscores the profound emotional impact on parents who are caregivers for children with ZSDs, highlighting the utility of patient community feedback and qualitative approaches to fully characterize the overall family experience. Simple, targeted approaches focusing on improved communication between healthcare professionals and families, as well as offering resources for emotional support may greatly improve the lives of families living with ZSD and other rare pediatric diseases.
Source: Molecular Genetics and Metabolism Reports - Category: Genetics & Stem Cells Source Type: research