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

Table 1.

Background variablesQuestionnaire (n = 13)Interview (n = 8)Gender Female64 Male74Shunt Yes116 No22Use of clean intermittent catheterization Yes127 No11Ambulatory status walk without aid44 walk with aid or unable to walk (e.g. wheelchair or other assistive device)94

Table 2.

Answer n = 13DomainQuestionCorrectInconclusiveIncorrectNot askedEtiology1. How do kids get spina bifida?22902. Can people get spina bifida as adults?7150Functional status3. What makes kids with spina bifida different from other kids?110204. How do kids with spina bifida usually have to go to the bathroom?120015. What happens if they forget to catheterize?110116. Why cannot kids with spina bifida walk quite right?6520Shunt functioning7. Where is a shunt located?110028. What does a shunt do?52429. How does it feel if a shunt is not working right?515210. What do doctors do if a child's shunt is not working right?10012

Table 3.

CategoriesSubcategoriesMedical termsLabel of disabilityShunted hydrocephalusEtiologyCausal explanationTime of contractionPhysical effectsMovementBowel and bladderBodily maturationSensory perceptionCognitive effectsMathematical abilityExecutive functionsMemoryMaintaining healthToilet activitiesPhysical exerciseSkin sore managementAchievement of independenceNo specific activities

Table 4

CategoriesSub-categoriesAttitude to own knowledgeAwareness of disabilityAssessment of knowledge stateOpinion on information acquisitionProcess of knowledge constructionInitial informationProviders of further informationSelf-initiated information acquisition