Decision-making
Per i genitori, gli assistenti, i fornitori di assistenza sanitaria e gli insegnanti, sorgono spesso preoccupazioni e domande riguardanti la cura e il benessere degli individui con sindrome di Cornelia de Lange.
The involvement of individuals with CdLS and their care providers in health-care decisions is essential. Intellectual disability and executive functioning impairments in individuals with CdLS can reduce an individual’s ability to make decisions. In these instances, care providers and health-care professionals have to decide what is best and document an individual’s values, preferences and quality of life.
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