title: Shared decision-making about assistive technology for the child with severe neurologic impairment.
abstract: Shared decision-making is a process that helps frame conversations about value-sensitive decisions, such as introduction of assistive technology for children with neurologic impairment. In the shared decision-making model, the health care provider elicits family values relevant to the decision, provides applicable evidence in the context of those values, and collaborates with the family to identify the preferred option. This article outlines clinical, quality of life, and ethical considerations for shared decision-making discussions with families of children with neurologic impairment about gastrostomy tube and tracheostomy tube placement.
authors.affiliation: Pediatric Outcomes Research Team (PORT), Division of Pediatric Medicine, Department of Pediatrics, University of Toronto, Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8, Canada; Institute for Health Policy, Management and Evaluation, University of Toronto, 155 College Street, Toronto, Ontario M5T 3M6, Canada; Pediatric Advanced Care Team (PACT), Division of Pediatric Medicine, Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8, Canada; Janice Rotaman Fellowship in Home Care Innovation, Division of Pediatric Medicine, Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8, Canada.
authors.forename: Katherine E
authors.initials: KE
authors.lastname: Nelson
authors.affiliation: Pediatric Outcomes Research Team (PORT), Division of Pediatric Medicine, Department of Pediatrics, University of Toronto, Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8, Canada; Institute for Health Policy, Management and Evaluation, University of Toronto, 155 College Street, Toronto, Ontario M5T 3M6, Canada; Child Health Evaluation Sciences, Research Institute, Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8, Canada; CanChild Centre for Disability Research, 1280 Main Street West, Hamilton, Ontario L8S 4L8, Canada. Electronic address: sanjay.mahant@sickkids.ca.
authors.forename: Sanjay
authors.initials: S
authors.lastname: Mahant
mesh_terms: D002648:Child; D002675:Child, Preschool; D003657:Decision Making; D005190:Family; D005260:Female; D005774:Gastrostomy / Q000379:methods*; D006801:Humans; D007223:Infant; D008297:Male; D009422:Nervous System Diseases / Q000628:therapy*; D010820:Physicians; D011368:Professional-Family Relations; D012656:Self-Help Devices; D014139:Tracheostomy / Q000379:methods*
keywords: Children with medical complexity; Gastrostomy; Neurologic impairment; Shared decision-making; Technology dependence; Tracheostomy