Self-Care in Pediatric Patients with Chronic Conditions: A Systematic Review of Theoretical Models

Abstract

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.

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

“…Having instruments based on a theoretical framework, as the models reported above, is fundamental to obtain sounder and valid instruments ( 81 ). Recently, a self-care model has been developed for complex chronic conditions ( 28 ). This model includes the affecting factors, self-care behaviors and outcomes, highlighting that the more the patients are engaged in self-care behaviors, the more the results are positive.…”

“…However, this Middle-Range Theory was developed for adults. In the pediatrics, especially for CYAs, few theoretical models have been described, such as the new comprehensive model of self-care in CYAs ( 28 ). This model emphasized that self-care is a very broad concept since it not only includes personal skills but also healthcare actions provided by others.…”

“…This model emphasized that self-care is a very broad concept since it not only includes personal skills but also healthcare actions provided by others. Others include informal caregivers (parents, relatives, friends, volunteers) who play a crucial role in chronic patient care, but also formal caregivers (healthcare professionals) who provide specific professional support to families in terms of care management ( 28 ). Healthcare professionals cooperate with the patient and/or the family who maintain, if possible, the responsibility for their own care ( 29 ).…”

“…Self-care and quality of life, distress, and depression are interrelated ( 18 ). On the one hand, better self-care is associated with positive outcomes, such as more adequate disease control, greater patient safety, higher quality of life, and better personal development, which may lead to lower depression and distress ( 28 , 30 ). On the other hand, psychological aspects can also be considered as influencing factors; for example, if CYAs are depressed, then they are more likely to neglect self-care behaviors ( 31 , 32 ).…”

“…There is evidence that self-care actions have a positive impact on the health of CYAs with complex chronic diseases, such as diabetes and fibrosis cystic ( 28 , 41 ). Therefore, it is essential that these patients perform self-care ( 38 , 42 ).…”