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

Ms Nicole Saxby1,2, Dr Karen Ford1, A/Prof Sean Beggs1, Prof Malcolm Battersby2, Prof Sharon Lawn2

1Royal Hobart Hospital, Hobart, Australia, 2Flinders University Human Behaviour and Health Research Unit, Adelaide, Australia

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.


Nicole is an Advanced Practicing Dietitian based in Hobart, Tasmania. She currently works as the State-wide Paediatric Coordinator for the Tasmanian Cystic Fibrosis Service. She has a strong background in paediatric healthcare and has almost completed a Doctor pf Philosophy focused in Paediatric Chronic Condition Self-Management from Flinders University (submitting in the next few weeks). Other interests of Nicole’s are interdisciplinary practice, knowledge translation and implementation science. To date, Nicole’s biggest professional achievement has been leading the Nutrition Guidelines for Cystic Fibrosis in Australia and New Zealand project involving over 40 dietitian and 20 interdisciplinary colleagues

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