Scientific Article 🇬🇧 Mentions KS

Exploring parents’ values in healthcare decision-making for rare genetic neurodevelopmental disorders: a qualitative study to inform guideline development

person Mirthe J. Klein Haneveld, Louise Cox, Petri J. C. M. Embregts, Alistair R. Niemeijer, Martina C. Cornel, Charlotte M. W. Gaasterland, Agnies M. van Eeghen

calendar_today Jan 1, 2026

This study interviewed 18 parents of people with rare genetic neurodevelopmental disorders to understand what matters in healthcare decisions. Parents valued balancing benefits, harms, and family burden, as well as equal access to continuous care. They saw decision-making as a shared process that respects parental knowledge and autonomy.