Communication about life-sustaining therapy: insights from the Adaptive Leadership Framework.


Journal Article

OBJECTIVE:Effective provider and caregiver communication is central to quality care during treatment for life-threatening illnesses. The study aim was to analyze communication patterns between providers and a parent of an infant with a life-threatening disease using the Adaptive Leadership Framework, which is an activity that involves mobilizing others to adapt to a difficult situation. METHOD:A secondary analysis was conducted on one case using 23 interviews with providers and mother of an infant diagnosed with Hurler's syndrome. The interviews focused on decision-making challenges in regard to the infant's treatment and were conducted over a 1-year period (pre-transplant, study entry, monthly, after a life-threatening event or substantial change in treatment and at 1-year post enrollment). Content analysis was used to identify and categorize communication patterns using concepts from the Adaptive Leadership Framework. RESULTS:Infant illness events and parent-provider caregiving were chronicled across a 1-year trajectory. Despite the life-threatening nature of Hurler's disease, the parent and providers did not discuss palliative care or end-of-life. The parent sought direction and answers from the providers. The Adaptive Leadership Framework suggested how communication approaches were often mismatched with the needs of the parent. DISCUSSION:The results of the study accentuate the need to improve communication between provider and parents about end-of-life for their child. Adaptive Leadership illuminates how providers can influence a parent's behavior when facing a challenging situation. This study suggests that Adaptive Leadership is a useful framework to guide research about healthcare communication in dealing with challenging issues.

Full Text

Duke Authors

Cited Authors

  • Neglia, E; Anderson, RA; Brandon, D; Docherty, SL

Published Date

  • January 2013

Published In

Volume / Issue

  • 1 / 2

Start / End Page

  • 417 - 424

PubMed ID

  • 25309745

Pubmed Central ID

  • 25309745

Electronic International Standard Serial Number (EISSN)

  • 2052-5656

International Standard Serial Number (ISSN)

  • 2052-5648

Digital Object Identifier (DOI)

  • 10.5750/ejpch.v1i2.682


  • eng