Hospital experiences and medical traumatic stress in adults with spina bifida.
Ellen Fremion, Nora Deibler, Juliana Abel and 1 others
PMID 40255116WHAT IT FOUND
Adults with spina bifida described hospital stays as frightening due to feeling unheard, care delays, and providers lacking condition knowledge.
They valued clear communication, family presence, and self-advocacy. These themes describe patient experiences and do not prove that specific interventions reduce traumatic stress.
Key findings
01Participants reported feeling unheard by providers, encountering unwelcoming adult hospital environments, and experiencing frustration with care delays.
02Positive supports included self-advocacy, resilience, family presence, and clear patient-provider communication.
03Descriptive analysis showed participants with higher depression, anxiety, and PTSD scores also reported more medical traumatic stress symptom clusters.
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
Small sample size from a single clinic limits generalizability. The study is qualitative and descriptive, so it cannot determine cause and effect. No validated scale for medical traumatic stress exists for adults with spina bifida, so a pediatric parent-report measure was adapted. Statistical tests for associations were not applied due to the small sample. The study is relevant to speech-language pathologists only if they directly manage adult spina bifida care or trauma-informed communication, which the paper does not explicitly state.
Declared interests
Funded by a National Institute of Nursing Research K-award grant. The authors declared no potential conflicts of interest.
The easy way to misread this
Do not interpret the co-occurrence of high anxiety or depression scores with medical traumatic stress symptoms as evidence that treating one will reduce the other. This study describes associations in a small group but did not test interventions or establish causality.