Publication Date

8-1-2025

Journal

Journal of Pediatric Rehabilitation Medicine

DOI

10.1177/18758894251333917

PMID

40255116

PMCID

PMC12421393

PubMedCentral® Posted Date

9-11-2025

PubMedCentral® Full Text Version

Author MSS

Abstract

Purpose

This study examined hospital and emergency department (ED) experiences of adults with spina bifida (SB), medical traumatic stress (MTS) and participant characteristics including anxiety, depression, post-traumatic stress disorder (PTSD) symptoms, and resiliency scores.

Methods

Adults with SB who had a hospital or ED encounter within the last five years were recruited from a medical home clinic and completed a structured interview and validated questionnaires. Narrative inquiry was used and descriptive analyses were conducted. MTS scores were reported per participant characteristics and emotional health questionnaire score counts and percentages.

Results

Twenty-five adults with SB representing 37% of eligible patients were recruited. Most participants were positive for at least one MTS symptom cluster. There was an increased number of MTS symptom clusters for participants with higher depression, anxiety, and PTSD scores, and decreased MTS symptom clusters for those with increased resilience. The narrative analysis yielded three distinct themes: a negative hospital environment, SB-related condition concerns and complications, and positive support when in the hospital.

Conclusion

Further research with a larger study population is necessary to examine the extent to which MTS is present in individuals with SB of all ages, to understand how MTS symptoms may change with age and experience, and to identify risk and protective factors for emotional health in the presence of MTS. However, this study identified opportunities for improving healthcare experiences for this patient population, including facilitating communication, promoting self-advocacy, self-efficacy, resilience, and familial support which can be implemented for all age groups.

Keywords

Humans, Spinal Dysraphism, Male, Female, Adult, Stress Disorders, Post-Traumatic, Young Adult, Emergency Service, Hospital, Surveys and Questionnaires, Anxiety, Middle Aged, Depression, Resilience, Psychological, Adolescent, spina bifida, medical traumatic stress, care experience

Published Open-Access

yes

Share

COinS
 
 

To view the content in your browser, please download Adobe Reader or, alternately,
you may Download the file to your hard drive.

NOTE: The latest versions of Adobe Reader do not support viewing PDF files within Firefox on Mac OS and if you are using a modern (Intel) Mac, there is no official plugin for viewing PDF files within the browser window.