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, et al.

calendar_today Jul 13, 2026

A 2026 study in the Journal of Intellectual Disability Research explored how parents of people with rare genetic neurodevelopmental disorders—including Kleefstra syndrome—approach healthcare decisions. Parents emphasized balancing benefits and burdens, equal and accessible care, recognition of their lived expertise, and support for the individual’s autonomy. The findings aim to make clinical guidelines more family-centred.

Exploring Parents' Values in Healthcare Decision-­ Making for Rare Genetic Neurodevelopmental Disorders: A Qualitative Study to Inform Guideline Development

Exploring Parents' Values in Healthcare Decision- Making for Rare Genetic Neurodevelopmental Disorders: A Qualitative Study to Inform Guideline Development