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

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 was 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

Experiences among children and adolescents of living with spina bifida and their visions of the future

Purpose: Transitioning to independence may be problematic for persons with spina bifida (SB). Experiences of young persons with SB may provide insights into this group's needs for support. Therefore, the aim of this study was to investigate children'\u80\u99s and adolescents' experiences of living with SB, their social and emotional adjustment, and their thoughts about becoming independent adults. Method: Semi-structured interviews were conducted with young persons with SB (N = 8, age range 10 - 17 years). Social and emotional problems were assessed using Beck Youth Inventories. The interview transcripts were analyzed using qualitative content analysis. Results: Three main themes were found: being a person with SB; everyday living as a person with SB; and preparing for life as an adult with SB. Indications of emotional and social problems were most prominent among participants with milder physical disability. Conclusions: The findings indicate that young persons with SB may overestimate their independence. Other potentially problematic areas were lack of motivation, planning and preparedness for becoming independent. Research on transition to independence in this group should consider assistance at an early age in planning and executing strategies for independence. In addition, the potentially difficult situation for young persons with mild SB should be investigated further.Funding agencies: Swedish Inheritance Fund, County Council of Ostergotland; Research Fund of the Linkoping University Hospital</p

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

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

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

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