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

Elizabeth Neglia, Ruth Anderson, Debra Brandon, Sharron Docherty


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 using 23 interviews of providers and mother with 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 apparent 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.


Adaptive Leadership, chronic critical illness, communication, infants, leadership, parent and provider relations, person-centered healthcare

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