Understanding Disease Aetiology and Related Needs Knowledge of Parents of Children With Spina Bifida.
Olivia E Clark, Madeleine C Suhs, Taylor L Hilderbrand and 4 others
PMID 41466160WHAT IT FOUND
Parents most often cited walking and toilet issues as primary concerns.
Mothers linked spina bifida to folic acid deficiency, while many fathers were unsure of the cause. Both parents reported significant gaps in understanding the condition's origins.
Key findings
01Medical concerns, specifically ambulation and urological/toileting issues, were the most frequently reported problems associated with spina bifida by parents.
02Mothers most frequently attributed spina bifida to maternal health factors like folic acid deficiency, whereas a sizeable subset of fathers reported being unsure of the cause.
03Parents reported nonmedical concerns including social difficulties, limited activities, and neurocognitive impacts, though neurocognitive issues were cited less frequently than medical ones.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was recruited from a specific Midwestern US catchment area, limiting generalizability to other cultural or geographic contexts. Data came from written open-ended survey responses rather than interviews, which may have missed nuance. The age range of participants was broad, and overlapping ages across time points make it difficult to attribute changes strictly to developmental stage. This is a descriptive qualitative study; it cannot determine causality or the effectiveness of any intervention.
Declared interests
Funding was provided by the March of Dimes Birth Defects Foundation, NICHD, and NINR. The authors declared no conflicts of interest.
The easy way to misread this
Do not interpret these themes as evidence that any specific treatment improves outcomes. The study describes parent perceptions and knowledge gaps, not clinical efficacy. Furthermore, do not assume all parents understand the aetiology of spina bifida; the high rate of uncertainty among fathers indicates a need for clear, repeated psychoeducation.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →