Abstract

It is distinctive that the issues and concerns with respect to children with chronic conditions and how their families experience and adapt to the chronic condition are universal in nature. This universality is demonstrated across the range of chronic conditions, healthcare systems, and cultures, as well as beyond national boundaries. Children and families are confronted with adapting to the demands of the specific chronic condition, while meeting the family's developmental needs. These multiple challenges of adapting to and managing the child's chronic condition create stress and impact the family's overall quality of life. Improving quality of life of children with chronic conditions and their families is dependent upon balancing the demands of the chronic condition, while managing the chronic condition through effective intervention strategies based on the latest evidence for practice ( Christian, 2010 Christian B.J. Translational research – Challenges for parents and families: Demands of caregiving of children with chronic conditions. Journal of Pediatric Nursing. 2010; 25: 299-301 Abstract Full Text Full Text PDF PubMed Scopus (22) Google Scholar , Christian, 2016a Christian B.J. Translational research – Adapting to the stress and challenges of chronic conditions in children and adolescents. Journal of Pediatric Nursing. 2016; 31: 736-739 Abstract Full Text Full Text PDF PubMed Scopus (8) Google Scholar , Christian, 2016b Christian B.J. Translational research – Balancing the demands of chronic illness, caregiving and self-management for children, adolescents, and their parents. Journal of Pediatric Nursing. 2016; 31: 449-452 Abstract Full Text Full Text PDF PubMed Scopus (13) Google Scholar , Christian, 2019 Christian B.J. Translational research – Family management and parenting stress associated with chronic conditions in children. Journal of Pediatric Nursing. 2019; 45: 73-75 Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar ). Moreover, children and families must learn to advocate for their needs as they navigate healthcare systems to receive the highest quality of care. As children with chronic conditions grow and develop progressing through adolescence into adulthood, they are confronted with the prospect of transitioning to adult healthcare. This transition process may be difficult and challenging, thereby magnifying the issues and concerns associated with managing the demands of the chronic condition. In this way, maintaining quality of life for children with chronic conditions and their families becomes a constant struggle of adapting to the chronic condition, while confronting the healthcare system to ensure the best quality of care. The universal nature of the adaptation process to the stress and challenges of chronic conditions in children provides the foundation to guide the development of intervention strategies designed to improve the quality of care and, ultimately, improve the quality of life for children with chronic conditions and their families.

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