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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...
Context in source publication
Context 1
... the remaining five only completed a questionnaire. Background information about each participant was collected from his or her respective caregiver (Table 1). None of the participants were reported to have any intellectual Youth with spina bifida: Condition-related knowledge disability diagnosis. ...
Citations
... [11,12] It is therefore crucial to develop intervention programmes to support people with SB throughout the transition process, [13] an endeavour that requires an understanding of young individuals' perspectives on living with SB. [14] Previous research has investigated several aspects of living with SB, including self-management, [12,15] selfconcept and family relationships, [16] peer relationships, [17] experience of disability, self-understanding and identity, [18,19] everyday living, [20] fecal incontinence, [21] social support, [22] the process of transition to adult health care and adulthood [23,24] and conditionrelated knowledge. [25] The main focus of most studies is on how youth and adults with SB view their current situation rather than long-term plans and expectations. ...
... Recruitment took place at a clinic that monitors and manages the bowel and bladder functions of children and adolescents with SB. [25] Consent to participate was given by the persons with SB and their caregivers after being informed about the study. The recruitment efforts were stopped after eight interviews, at which time it was considered that the collected data reflected a range of experiences in a sample of children and adolescents that varied in age, sex and condition severity. ...
... This study focuses on results from the first two of these interview areas; findings regarding the participants' knowledge about SB has been reported previously. [25] A semi-structured interview format [36] was employed in which participants were posed a series of open-ended questions from an interview guide. Table 2 lists example questions for the two question areas. ...
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's 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. Implications for rehabilitation Children and adolescents with spina bifida might lack the motivation and skills for planning their future and health care programmes should therefore include preparations for life as an adult. Clinical assessment of the level of independence should specifically distinguish between the activities they know how to do and what tasks they actually execute independently. Routine follow-ups should include screening for problems with social and emotional adjustment. Be aware of a potential condition-severity paradox whereby those with less severe impairment might have an increased risk of developing symptoms of social and emotional problems.
Objective
This study aims to characterize the growth in condition-related knowledge in youth with spina bifida (SB), identify neurocognitive predictors of growth, and examine associations between growth in knowledge and subsequent levels of medical self-management skills.
Methods
Participants were recruited from a larger longitudinal study involving 140 youth with SB and caregivers, who completed questionnaires and interviews every 2 years over 8 years. The current study included the youth report of condition-related knowledge and medical self-management skills. Youth attention and executive functioning were assessed via parent and teacher reports and performance-based assessment. Latent growth curves were conducted in Mplus Version 8 (Múthen, L. K., & Múthen, B. O. [1998]. Mplus User’s Guide. [Eighth]. Muthén & Muthén) to examine change over time in youth-reported condition-related knowledge. Neurocognitive variables were included as predictors of growth in knowledge and regression analyses were used to predict medical self-management skills from growth in condition-related knowledge.
Results
Youth condition-related knowledge increased linearly. Better youth performance on working memory and attention performance-based tasks predicted a higher intercept for condition-related knowledge at T1, but not slope. Teacher and parent reports of inattention and executive dysfunction were not consistent predictors of intercept and growth. Slope of condition-related knowledge was not predictive of subsequent youth self-management skills.
Conclusions
Youth with SB gain condition-related knowledge over time. However, executive dysfunction and inattention may impede gains in condition-related knowledge. Thus, executive functioning supports, attention-related interventions, and psychoeducation may support condition-related knowledge gains and later medical self-management skills, but further research assessing family and cultural factors is needed.
