Condition-related knowledge among children and adolescents with spina bifida in a Swedish county

Abstract

Spina bifida is a congenital birth defect, resulting in physical and cognitive dysfunctions. Condition-related knowledge among children and adolescents with spina bifida is essential to facilitate independent management of their condition. The aim was to describe the condition-related knowledge among children and adolescents with spina bifida in a Swedish county. Thirteen persons with spina bifida (10 to 17 years) participated. Condition-related knowledge was assessed (n = 13) using a questionnaire (KOSB) and a semi-structured interview (n = 8). Interview data were analyzed using qualitative content analysis. The participants had well-developed knowledge concerning proper bladder management, but were lacking knowledge of signs of shunt malfunctioning and etiology. Some participants were uninterested in learning about their condition, despite being aware that they lacked knowledge. The findings indicate potential areas that may be included in local educational initiatives. It should be considered that persons with spina bifida may not be motivated to learn more about their condition.

Keywords:

• spina bifida
• children
• adolescents
• condition knowledge
• qualitative content analysis

Acknowledgements

This work was supported by grants from the Swedish Inheritance Fund, County Council of Östergötland and from the Research Fund of the Linköping University Hospital.