Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review

Abstract

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.

Autonomía relacional en pediatría

“…Toma de decisiones compartida en pediatría La participación de los niños en la toma de decisiones sanitarias es importante en la práctica clínica habitual, pero fundamental en niños con algún trastorno crónico. Se calcula que, en Europa, entre un 9-15% de los niños o adolescentes presentan algún tipo de enfermedad crónica (Biagioli et al, 2022;Miller, 2018;Suris, 2004). En el día a día, estos niños y familias afrontan numerosas decisiones de mayor o menor gravedad con relación a opciones terapéuticas, dieta o actividades.…”

“…Varios estudios muestran cómo la participación del menor en la toma de decisiones produce una mayor satisfacción con los cuidados médicos recibidos, percibida tanto por los padres como por el menor y una mayor cooperación por parte del niño en el tratamiento promueve la sensación de control, experimentando la enfermedad de forma menos estresante y facilitando el ajuste positivo (Mc Cabe, 1996;Coad y Shaw, 2008;Suris, 2004;Biagioli et al, 2022;Jeremic et al, 2016).…”

Child self-care autonomy in health (scale for parents): development, internal structure, and sex/age correlates

“…Accordingly, we decided to apply the concept of “self-care” as initially suggested by Riegel et al (2012) . Thus, the term is defined as a complex of practices that are intended to maintain, monitor, and manage personal health conditions ( Riegel et al, 2012 ; Biagioli et al, 2022 ). Self-care maintenance encompasses practices that help a person sustain emotional and physical stability, comprising (а) medical adherence, (b) treatment, (c) nutrition, (d) lifestyle, (e) prevention, and (f) familiarity with health-care services.…”

“…Although the current literature offers many questionnaires assessing individual levels of self-care qualities among children with chronic conditions, no comparable instruments have been made available for the members of this population without acute or chronic conditions ( Biagioli et al, 2022 ). The goal of this paper is to present a scale aimed at measuring self-care behaviors in the health sphere for individuals under age 18, regardless of the existence of diagnosed chronic illnesses 1 .…”

Transition readiness among Finnish adolescents with juvenile idiopathic arthritis

“…Su cient self-management skills form the basis of a successful transition (13). There are many types of practice that can enhance transition readiness and improve the self-management skills of these adolescents (14).…”