The ALIGN Framework: A Parent-Informed Approach to Prognostic Communication for Infants With Neurologic Conditions.

BACKGROUND AND OBJECTIVES
Clinicians often communicate complex, uncertain, and distressing information about neurologic prognosis to parents of critically ill infants. While communication tools have been developed in other disciplines and settings, none address the unique needs of the neonatal and pediatric neurology context. We aimed to develop a parent-informed framework to guide clinicians in communicating information about neurologic prognosis.


METHODS
Parents of infants with neurologic conditions in the intensive care unit were enrolled in a longitudinal study of shared decision-making from 2018-2020. Parents completed semi-structured interviews following recorded family meetings with the health care team, at hospital discharge, and 6 months after discharge. All interviews targeted information about parent preferences for prognostic disclosure. We analyzed the data using a conventional content analysis approach. Two study team members independently coded all interview transcripts and discrepancies were resolved in consensus. We used NVIVO 12 qualitative software to index and organize codes.


RESULTS
Fifty-two parents of 37 infants completed 123 interviews. Parents were predominantly mothers (n=37/52, 71%) with a median age of 31 (range 19-46). Half were Black (n=26/52, 50%) and a minority reported Hispanic ethnicity (n=2/52, 4%). Inductive analysis resulted in the emergence of five phases of prognostic communication (Approach, Learn, Inform, Give support, and Next steps: ALIGN): 1) Approach: Parents appreciated receiving consistent information about their child's neurologic outcome from clinicians who knew their child well. 2) Learn: Parents valued when clinicians asked them how they preferred receiving information and what they already knew about their child's outcome prior to information delivery. 3) Inform: Parents valued honest, thorough, and balanced information that disclosed prognostic uncertainty and acknowledged room for hope. 4) Give support: Parents valued empathic communication and appreciated clinicians who offered real-time emotional support. 5) Next steps: Parents appreciated clinicians who connected them to resources, including peer support.


DISCUSSION
The ALIGN framework offers a novel, parent-informed strategy to effectively communicate neurologic prognosis. While ALIGN represents key elements of a conversation about prognosis, each clinician can adapt this framework to their own approach. Future work will assess the effectiveness of this framework on communication quality and prognostic understanding.