Hospital experiences and medical traumatic stress in adults with spina bifida

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.