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Objective: Autonomy is a fundamental issue for children and adolescents with chronic diseases, but specific challenges complicate its development, such as the management of medical care, emotional support, and relationships with those around them. To date, few studies have investigated the concept of autonomy in children. Furthermore, autonomy remains a construct with a broad, multi-theoretical, and non-consensual definition. This review aims to analyze the definitions, theoretical foundations, assessment tools, and different dimensions of autonomy in the context of pediatric chronic diseases. Methods: Five electronic databases (EMBASE, PubMed, PsycINFO, CINAHL, and Scopus) were searched for studies containing a definition of autonomy or a description of its dimensions. Only studies involving children or adolescents (aged 0-18) with chronic physical diseases were included. Results: The descriptive analysis provided a detailed inventory of the theoretical foundations underlying the definitions and the assessment tools for autonomy. Content analysis of the definitions of autonomy highlighted four themes relevant to understanding the conceptual overlay of autonomy in the context of pediatric chronic diseases: (1) dimensional conception of autonomy, (2) becoming a decision-maker, (3) becoming self-reliant and (4) becoming oneself. Conclusions: This review highlights the conceptual overlaps of autonomy, proposing a more unified vision. It also demonstrates the limitations of current conceptualizations and assessment tools, in which the specificities of chronic diseases in children are not considered. Integrating the role of healthcare providers and developmental issues would be essential to better support autonomy in the context of pediatrics.
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Mallien, Z., Luminet, O., Hanin, E., Grimm, E., Kaemmerer, M., Bovo, A., & Lahaye, M. (2025). Autonomy in children and adolescents with chronic diseases: A systematic literature review of the conceptualization and evaluation. Journal of Pediatric Nursing, 83, 168-182. https://doi.org/10.1016/j.pedn.2025.04.030 (Original work published 2025)