Quality of Life of Children Born with Anomalies and Their Families
A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Global Health".
Deadline for manuscript submissions: closed (30 April 2024) | Viewed by 7941
Special Issue Editors
2. Department of Pediatrics, Institute of Clinical Sciences, The Queen Silvia Children’s Hospital, Gothenburg University, 416 86 Gothenburg, Sweden
Interests: patient reported outcomes; health psychology; quality of life; mental health; congenital abnormalities; pediatric surgery and urology; coping; psychological adaptation; psychometrics; children and youth; child development; family studies; psychology of adolescence; nursing
Interests: health psychology; child development; pedagogy and education; early childhood education; quality of life research; adolescent development; developmental psychopathology; young adults; youth development; psychology of adolescence; psychological assessment; health-related quality of life; patient reported outcomes; family studies; social development
Special Issue Information
Dear Colleagues,
The World Health Organization has defined congenital anomalies as one of the main causes of the global burden of disease, and low- and middle-income countries are disproportionately affected. Congenital anomalies, which refers to structural or functional anomalies which take place during intrauterine life, affect an estimated 5-6% of babies. They can range from very mild to severe. Congenital anomalies can be isolated or present in a characteristic combination or pattern that may affect one or more organ systems. Major anomalies are associated with an increased risk of death, medical and/or surgical healthcare needs and impacts on physical appearance. Generally, in the last few decades, the survival rates of children with serious congenital anomalies have improved. A surviving child’s condition may affect the way they develop, function and look—in some cases, for the rest of their lives. Becoming a parent to a sick newborn with possible long-term healthcare needs is associated with elevated stress levels. The caregiver’s response to their child’s needs is an essential factor contributing to the child’s psychological development and health. This creates the need for a good healthcare system, school and society which can respond to their needs and promote a good quality of life.
Quality of life (QOL) refers to an individual’s perception of their position in life in the context of the culture and value system where they live. The concept is multidimensional and covers physical, social, and psychological functioning and well-being. In the field of healthcare, it is referred to as health-related quality of life (HRQOL), and improving quality of life is a major goal of therapy in children today. Whereas generic QOL/HRQOL instruments enable comparisons between an affected child and healthy references or other clinical populations, a condition-specific QOL instrument captures issues that are more relevant to a specific condition/disease. QOL can be affected by clinical factors, psychological adaptation, socioeconomic standards, family functioning and more. Although self-report is regarded as primary source of information, parents generally act as proxies for children, complementary to child-reports or solely due to the young age or health state of those who are not able to respond themselves.
This Special Issue warmly welcomes all articles aiming to increase our understanding of QOL/HRQOL in children and adolescents with congenital malformations and their families. The children may have structural or functional anomalies which are rare and more frequent. The study may have a methodological, clinical, prognostic, observational, comparative, or qualitative design, or any other focus. We would be glad to receive research from different parts of the world, with lower–middle- and high-income countries being represented.
Dr. Michaela Dellenmark-Blom
Dr. Julia H. Quitmann
Guest Editors
Manuscript Submission Information
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Keywords
- quality of life
- health-related quality of life
- patient-reported outcome
- coping
- adaptation
- psychometry
- health psychology
- congenital anomaly
- malformation
- rare disease
