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Quality of life for children with disabilities
1Nordic School of Public Health, Göteborg.
Insights
Children with Cystic Fibrosis and Myelomeningocele report good material conditions but face challenges in personal psychological well-being, highlighting areas for improved health policies.
Area of Science:
- Pediatrics
- Public Health
- Quality of Life Research
Background:
- Existing research on children with special needs often overlooks quality of life, focusing instead on disease-specific issues.
- The World Health Organization's (WHO) 'Health for All' policy emphasizes equity, necessitating an evaluation of life quality for vulnerable populations.
Purpose of the Study:
- To compare the quality of life of children with Cystic Fibrosis and Myelomeningocele in Nordic countries against a general child population.
- To assess the extent to which equity in health outcomes has been achieved in the Nordic region for these specific child groups.
Main Methods:
- A comparative study involving 951 children with Cystic Fibrosis and Myelomeningocele from five Nordic countries.
- Comparison with a control group of 10,290 children from a random sample.
Main Results:
- Children with disabilities perceive favorable material and socio-economic conditions.
- Personal psychological conditions were reported as less favorable compared to the general population.
Conclusions:
- While Nordic children with Cystic Fibrosis and Myelomeningocele experience adequate external resources, their internal psychological well-being requires attention.
- Future health policies should prioritize enhancing the personal psychological conditions for children with disabilities to promote overall quality of life and equity.
Abstract:
Studies on children with special needs mainly concentrate on disease-oriented health problems and neglect the positive aspects of quality of life. In this study the quality of life of children with Cystic Fibrosis and Myelomeningocele, 951 children in all, in the five Nordic countries is compared to that of a random sample of 10,290 children. The aim of the study was to see how the issue of equity, a main objective of the WHO health for all policy, has been met in the Nordic countries. Quality of life is defined as one of the essential resources of a population in terms of external, inter-personal and personal conditions. The study shows that children with disabilities have, and perceive that they live in good material and socio-economic conditions. However, the personal psychological conditions are less favourable, which indicates that this is a priority area for future health policies.