What Should We Aim for when Addressing Uncertainty from Serious Illness? A Stakeholder Focus Group Study

Area of Science:

• Palliative Care
• Clinical Psychology
• Health Systems Research

Background:

• Uncertainty is a constant in serious illness, affecting patients, carers, and healthcare professionals across physical, psychological, and temporal dimensions.
• While uncertainty cannot be eliminated, effective strategies for addressing it in clinical practice remain unclear.

Purpose of the Study:

• To identify core goals and approaches for managing irreducible uncertainty in serious illness.
• To inform the development of interventions for "good care" in the context of serious illness-related uncertainty.

Main Methods:

• A one-day rapid consensus workshop was conducted in the United Kingdom.
• Five mixed focus groups (6-8 participants each) discussed uncertainty and its management in serious illness.
• Inductive reflexive thematic analysis of focus group transcripts generated a thematic model.

Main Results:

• The overarching purpose identified was "Finding security in uncertainty together."
• Four key domains emerged: (1) relationships and trust within the care team, (2) personalized uncertainty management, (3) reframing uncertainty as normal, and (4) shared decision-making and parallel planning.

Conclusions:

• A novel model for approaching uncertainty in serious illness was developed.
• Strengthening relationality across the care team is crucial, shifting focus beyond the individual patient.
• Psychologically reframing living with uncertainty and aligning patient, carer, and clinician needs are essential goals.