Self-management for children and young people with chronic conditions: An international consensus

Objectives: To define ‘supported self-management’ for children and young people with chronic conditions. To create a consensus list of developmentally appropriate self-management tasks that can be completed by the child/young person, and self-management support practices for clinicians. Study design: This study used a Delphi technique . Based on research output, international experts (including doctors, nurses, allied-health professionals, and teachers) were invited to participate in three survey rounds. Round one contained open-ended and multiple-choice questions eliciting general opinions about children’s and young people’s self-management. Thematic analysis elicited qualitative themes and defined endpoints. 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. Statements were considered finalised when: 1) expert consensus was reached; and, 2) the research team agreed with expert consensus. Finalised statements informed creation of the ‘Children and Young People as Partners in Health Consensus-based Tool’. Results: Sixteen experts participated: 12 completed round one; 14 completed round two; and 12 completed round three. Of 99 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. Conclusions: This research provides consensus-based guidance for paediatric clinicians providing self-management support to children and young people with chronic conditions.