Shared decision-making about assistive technology for the child with severe neurologic impairment

Katherine E Nelson; Sanjay Mahant

doi:10.1016/j.pcl.2014.04.001

Shared decision-making about assistive technology for the child with severe neurologic impairment

Pediatr Clin North Am. 2014 Aug;61(4):641-52. doi: 10.1016/j.pcl.2014.04.001. Epub 2014 May 20.

Authors

Katherine E Nelson¹, Sanjay Mahant²

Affiliations

¹ 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.
² 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: [email protected].

PMID: 25084713
DOI: 10.1016/j.pcl.2014.04.001

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.

Keywords: Children with medical complexity; Gastrostomy; Neurologic impairment; Shared decision-making; Technology dependence; Tracheostomy.

Publication types

Case Reports
Review

MeSH terms

Child
Child, Preschool
Decision Making*
Family
Female
Gastrostomy / methods*
Humans
Infant
Male
Nervous System Diseases / therapy*
Physicians
Professional-Family Relations*
Self-Help Devices*
Tracheostomy / methods*