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. 2022 Jul;48(4):623-633.
doi: 10.1111/cch.12969. Epub 2022 Feb 2.

Parents' school-related concerns and perceived strengths in youth with spina bifida

Adrien M Winning  1 , Monique Ridosh  2 , Elicia Wartman  1 , Tessa Kritikos  1 , Catherine Friedman  1 , Meredith Starnes  1 , Autumn N Crowe  1 , Grayson N Holmbeck  1
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Parents' school-related concerns and perceived strengths in youth with spina bifida

Adrien M Winning et al. Child Care Health Dev. 2022 Jul.

Abstract

Background: Although the academic difficulties of children with spina bifida (SB) are well-documented, there is limited literature on parents' views of their children's school experiences and school-related supportive services. Thus, the current study examined parents' school-related concerns, as well as perceived areas of strength, among children with SB.

Methods: Using a mixed-methods approach, 30 families (29 mothers and 19 fathers) of children with SB (ages 8-15 years) completed questionnaires and interviews. Content analysis was used to generate themes from interview data about parents' school-related concerns and perceptions of their child's strengths.

Results: Overall, six themes emerged when assessing both parents' concerns and perceived strengths. Some parents did not endorse school concerns or strengths for their child. However, other parents described concerns related to academic performance, cognitive abilities, lack of school support, missed school and/or class time and disengagement, as well as strengths such as academic skills, cognitive abilities, persistence, self-advocacy and agreeableness. Despite parents' concerns about their children's academic performance, quantitative data revealed that less than 50% of children had received a neuropsychological evaluation and/or academic accommodations; additional quantitative data supported the qualitative findings.

Conclusions: The mixed-methods approach used in this study provides a richer understanding of parents' experiences in the school setting when they have a child with SB. Results can inform clinical practice, identifying a need to improve academic support for children with SB and help parents manage education-related stressors.

Keywords: children; parent concerns; school; spina bifida; strengths.

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Figures

FIGURE 1
FIGURE 1
Possible interventions to address Parents' School concerns in the context of spina bifida. IEP = individualized education program. ADHD = attention‐deficit/hyperactivity disorder. 1La Greca, A. M., & Lemanek, K. L. (1996). Editorial: Assessment as a process in pediatric psychology. Journal of Pediatric Psychology, 21(2), 137–151. 2Copp, A. J., Adzick, N. S., Chitty, L. S., Fletcher, J. M., Holmbeck, G. N., & Shaw, G. M. (2015). Spina bifida. Nature Reviews Disease Primers, 1, 15007. 3Evans, S. W., Owens, J. S., & Bunford, N. (2014). Evidence‐based psychosocial treatments for children and adolescents with attention‐deficit/hyperactivity disorder. Journal of Clinical Child & Adolescent Psychology, 43(4), 527–551. 4Ahmann, E., Saviet, M., & Joy Tuttle, L. (2017). Interventions for ADHD in children and teens: A focus on adhd coaching. Pediatric Nursing, 43(3), 121–131
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