title: Factors that impact resuscitation preferences for young people with severe developmental disabilities.
abstract: A cross-sectional descriptive study was performed to evaluate resuscitation decisions and factors that impact these choices for young people with severe developmental disabilities residing in a skilled nursing facility. Decision-makers were provided with information to clarify resuscitation preferences. Parents/guardians of 30 of the 67 residents also completed a survey. A significant number of decision-makers changed their resuscitation preference to DNR after detailed explanations were provided. Survey results suggest that interpersonal relationships, such as those with family members, religious leader, and physician, were more influential for families who chose full resuscitation compared to those with DNR preferences. Factors such as perception of quality of life and medical condition of the individuals with developmental disabilities were not significantly different between these two groups.
authors.affiliation: Neurodevelopmental Disabilities Program, Children's Hospital Boston, Division of General Pediatrics, Boston, MA 02115, USA. Sandra.friedman@childrens.harvard.edu
authors.forename: Sandra
authors.initials: S
authors.lastname: Friedman
authors.forename: Dana
authors.initials: D
authors.lastname: Gilmore
mesh_terms: D000328:Adult; D016223:Advance Directives; D002648:Child; D002755:Choice Behavior; D003430:Cross-Sectional Studies; D003657:Decision Making; D002658:Developmental Disabilities; D006801:Humans; D011584:Psychology; D012151:Resuscitation; D012720:Severity of Illness Index