Developmentally appropriate supported self-management for children and young people with chronic conditions: A consensus

Objective/s: To create a consensus list of self-management definitions, recommendations, and endpoints for children and young people (0–20 years) with chronic conditions.

Methods: This study used a Delphi technique. Based on the number of relevant peer-reviewed publications, clinical academics were invited to participate in three survey rounds. Round one contained open-ended and multiple-choice questions eliciting general opinions on self-management. For round two, results were provided to the interdisciplinary expert panel as statements for rating their agreement using a 7-point Likert scale, with consensus predefined as moderately or extremely satisfied by >70% of participants. Statements not meeting consensus were re-presented in round three, with group feedback incorporated. Finalised statements informed creation of the ‘Partners in Health: Self-Management Consensus List for Children and Young People’.

Results: Sixteen clinical academics participated: 12 completed round one; 14 completed round two; and 12 completed round three. Of 101 statements, 90 reached consensus, with statements separated into five developmentally appropriate groups. Statements covered broad self-management and self-management support domains including knowledge, involvement, monitoring/responding to symptoms, transition, impact, lifestyle, and support. Division of responsibility and autonomy were distinct themes.

Conclusion and practice implications: This research provides consensus-based guidance for clinicians providing paediatric self-management support.