Models of lifelong care for children and adolescents with chronic conditions in low-income and middle-income countries: a scoping review

Abstract

Globally, non-communicable diseases (NCDs) or chronic conditions account for one-third of disability-adjusted life-years among children and adolescents under the age of 20. Health systems must adapt to respond to the growing burden of NCDs among children and adolescents who are more likely to be marginalised from healthcare access and are at higher risk for poor outcomes. We undertook a review of recent literature on existing models of chronic lifelong care for children and adolescents in low-income and middle-income countries with a variety of NCDs and chronic conditions to summarise common care components, service delivery approaches, resources invested and health outcomes.

Death anxiety, resilience, and family cohesion in parents of children and adolescents in the end stages of life

“…A review of literature shows that the occurrence and prevalence of chronic diseases among adolescents is increasing in many developing countries, so that one-third of children and adolescents suffer from one or more chronic diseases (Pinquart, 2020). Also, it was predicted that, in 2020, chronic diseases would be the main cause of death in this age group (Reif et al, 2022). Among these, the most common chronic diseases during adolescence are respiratory, cardiovascular, kidney, language-speechauditory disorders, cancer, and diabetes (Lerch and Thrane, 2019).…”

“…But chronic diseases especially cancer, cardiovascular diseases, neuromuscular diseases still account for many deaths among adolescents (Holakouie-Naieni et al, 2016). Death is a terrifying prospect for adolescents and parents: the thought of death exposes them to many fears, including fear of the hereafter, leaving their adolescents and parents, and being left alone (Reif et al, 2022). To confront their fears and concerns with regard to death, adolescents and parents ask their parents and care providers for information or even rely on fantasy.…”

“…To confront their fears and concerns with regard to death, adolescents and parents ask their parents and care providers for information or even rely on fantasy. Thus, there is an urgent need for immediate interventions on the part of care providers to address death among adolescents, e.g., efforts to prepare adolescents and their parents for death, raising their awareness of peaceful death, reducing their death anxiety, and promoting cohesion in these families (Lerch and Thrane, 2019;Reif et al, 2022).…”

Non-Communicable Diseases and Rare Diseases: A Current and Future Public Health Challenge within Pediatrics

“…“Vulnerable” children are more likely to be marginalized from access to healthcare and are at higher risks for poor outcomes. Healthcare systems must adopt appropriate responses to the growing burden of these diseases [ 13 ]. The treatment of NCDs and rare diseases requires close interactions between experts from different medical disciplines in interdisciplinary approaches.…”

“…The treatment of NCDs and rare diseases requires close interactions between experts from different medical disciplines in interdisciplinary approaches. Children can die from treatable NCDs (such as heart disease, type 1 diabetes, asthma and leukemia) or rare diseases when health promotion and specified care are not provided [ 13 ]. The rising trends in NCDs and rare diseases require child-centered and sustained efforts to prevent and screen these diseases and to improve the quality of life and chances of survival among children who are affected by these diseases.…”