Aligning goals, not perceptions: making space for illness perception in paediatric decision-making

Area of Science:

• Medical Sociology
• Clinical Psychology
• Bioethics

Background:

• Illness perception (IP) influences parental stress, decision-making, and engagement in pediatric and neonatal intensive care.
• Discrepancies between clinician and parent IP can lead to communication breakdown, moral distress, and decision-making delays.
• IP is often misconstrued as a lack of understanding, conflating subjective interpretation with factual comprehension.

Purpose of the Study:

• To differentiate illness perception from medical understanding in intensive care settings.
• To propose a decision-making framework that explicitly incorporates illness perception.
• To enhance clinician support for families and promote value-concordant medical decisions.

Main Methods:

• Conceptual analysis differentiating subjective illness interpretation from objective medical knowledge.
• Exploration of the impact of differing illness perceptions on communication and decision-making processes.
• Proposal of a novel approach to shared decision-making in pediatric intensive care.

Main Results:

• Illness perception is a distinct construct, shaped by individual values and experiences, not merely a lack of information.
• Misaligned illness perception can be misinterpreted by clinicians as a failure of understanding, hindering effective communication.
• Recognizing and addressing differences in illness perception is crucial for ethical and effective clinical practice.

Conclusions:

• Clinicians should recognize illness perception as a unique factor in family responses to medical information.
• Integrating illness perception into decision-making models can foster better communication and support value-concordant choices.
• Directly engaging with differing illness perceptions can improve ethically complex care in intensive settings.