Background: To improve outcomes in children and young adults (CYAs) with chronic conditions, it is important to promote self-care through education and support. Aims: (1) to retrieve the literature describing theories or conceptual models of self-care in CYAs with chronic conditions and (2) to develop a comprehensive framework. Methods: A systematic literature search was conducted on nine databases, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. All peer-reviewed papers describing a theory or a conceptual model of self-care in CYAs (0–24 years) with chronic conditions were included. Results: Of 2674 records, 17 met the inclusion criteria. Six papers included a theory or a model of self-care, self-management, or a similar concept. Six papers developed or revised pre-existing models or theories, while five papers did not directly focus on a specific model or a theory. Patients were CYAs, mainly with type 1 diabetes mellitus and asthma. Some relevant findings about self-care in CYAs with neurocognitive impairment and in those living with cancer may have been missed. Conclusions: By aggregating the key elements of the 13 self-care conceptual models identified in the review, we developed a new overarching model emphasizing the shift of self-care agency from family to patients as main actors of their self-management process. The model describes influencing factors, self-care behaviors, and outcomes; the more patients engaged in self-care behaviors, the more the outcomes were favorable.
Children and young adults (CYAs) with chronic conditions need to engage in self-care to improve their quality of life. This study aimed to retrieve the literature on instruments to assess self-care in CYAs living with chronic conditions and evaluate the psychometric proprieties of the instruments retrieved. A systematic literature review was conducted on six databases to identify peer-reviewed papers that described or used an evaluation instrument of self-care in CYAs with chronic conditions. Twenty-three articles describing 11 instruments of self-care were identified. Five instruments (45.45%) were developed for specific diseases, while six (54.54%) for various chronic illnesses. Most of the instruments were focused on treatment adherence within self-care maintenance (i.e., behaviors to maintain illness stability), excluding the monitoring of clinical parameters or the management of exacerbations. This review provides an overview of available instruments that measure self-care in CYAs with chronic conditions, which health professionals could use for patient education.
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