Self-care in children and young people with complex chronic conditions instrument: development and content validation

Introduction The numbers of children and young people living with chronic conditions are rising, with many experiencing significant functional limitations and complex healthcare needs. As life expectancy improves, there is a growing need to support families in managing care at home and promoting age-appropriate self-care behaviors. Existing frameworks provide evidence that self-care is essential for maintaining health, monitoring and managing changes, as it evolves with the child's development. Few instruments comprehensively assess self-care in pediatric populations or consider the role of parents. Objective(s) To develop and initially validate an instrument designed to assess self-care behaviors in children and young people with complex chronic conditions, and the contribution of their parents across different developmental stages. Methods This initial validation study, conducted between 2022 and 2023, included four phases: 1) scale development based on theoretical evidence; 2) content and face validation through expert interviews; 3) calculation of Content Validity Indexes; and 4) cognitive interviews for face validity. Eleven variants of the instrument were developed to tailor it to five age groups and addressed three core dimensions of self-care: maintenance, monitoring, and management. Eighty-six expert participants (healthcare providers, parents, and patients) took part in phases 2 and 3, while cognitive interviews were conducted with 5 patients and 13 parents in phase 4. Statistical analyses included Item-Content Validity Indexes and Scale-Content Validity Indexes. Results The final instrument, with an average of 37 items per variant, showed strong content validity, with Scale-Content Validity Indexes ranging from 0.91 to 0.98 and Item-Content Validity Indexes between 0.63 and 1. Minimal item revisions were made based on experts’ feedback. The instrument demonstrated good face validity and feasibility for online administration, with completion times between 6 and 14 min. Discussion A new comprehensive instrument that measures self-care behaviors in children and young people with complex chronic conditions and the contribution of parents was developed, considering the various developmental stages. Initial evidence supports its content and face validity. Study registration The study was ‘not registered’ in any public registry.