Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review
Title
Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review
Creator
Loura D; Ferreira AM; Romeiro J; Charepe Z
Identifier
Publisher
BMC Pediatrics
Date
2024
Subject
Adaptation Psychological; quality of life; Parents; infant; health promotion; decision making; Young Adult; Child; Humans; family functioning; Adolescent; Child Preschool; Chronic Disease; adolescent; Infant; Chronic disease; Continuity of Patient Care; burnout; Article; Health Transition; parent; terminal care; chronic disease; interpersonal communication; preschool child; medical education; polypharmacy; scoping review; health care organization; human; child; geographic distribution; awareness; young adult; hospitalization; palliative therapy; patient care; psychology; health practitioner; questionnaire; prevalence; therapy; investment; Transitional care; immunosuppressive treatment; transitional care; psychological adjustment; vulnerability; Healthcare; sleep quality; diagnostic accuracy; population dynamics
Description
Background: The prevalence of complex chronic conditions (CCC), which cause serious limitations and require specialized care, is increasing. The diagnosis of a CCC is a health-illness transition for children and their parents, representing a long-term change leading to greater vulnerability. Knowing the characteristics of these transitional processes is important for promoting safe transitions in this population. This scoping review aimed to map the available evidence on health-illness transition processes in children with complex chronic conditions and their parents in the context of healthcare. Methods: Six databases were searched for studies focusing on children aged 0–21 years with CCC and their parents experiencing health-illness transition processes, particularly concerning adaptation to illness and continuity of care, in the context of healthcare. Studies within this scope carried out between 2013 and 2023 and written in Portuguese or English were identified. The articles were selected using the PRISMA methodology. The data were extracted to an instrument and then presented with a synthesizing approach supporting the interpretation of the results. Results: Ninety-eight methodologically broad but predominantly qualitative articles were included in this review. Children with CCC have specific needs associated with complex and dynamic health-illness transitions with a multiple influence in their daily lives. Several facilitating factors (p.e. positive communication and a supportive therapeutic relationship with parents and professionals, as well as involvement in a collaborative approach to care), inhibiting factors (p.e. the complexity of the disease and therapeutic regime, as well as the inefficient organization and coordination of teams) and both positive (p.e. well-being and better quality of life) and negative response patterns (p.e. negative feelings about the chronic illness) were identified. Some interventions to support the transitional process also emerged from the literature. Pediatric palliative care is seen as a good practice and an integrative approach for these children and families. Conclusion: Health professionals play a fundamental role in supporting the transitional process and promoting positive response patterns. More significant investment is needed at the clinical and academic levels regarding production and dissemination of knowledge in this area to ensure the awareness of children with CCC and that their needs are fully enhanced.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Citation List Month
September List 2024
URL Address
Collection
Citation
Loura D; Ferreira AM; Romeiro J; Charepe Z, “Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review,” Pediatric Palliative Care Library, accessed February 10, 2025, https://pedpalascnetlibrary.omeka.net/items/show/19730.