Hospital experiences and medical traumatic stress in adults with spina bifida

Purpose This study examined hospital and emergency department (ED) experiences of adults with spina bifida (SB). It investigated the association between medical traumatic stress (MTS) and participant characteristics, 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. Interview responses were characterized using qualitative theme analysis, questionnaires were scored using published guidelines, and MTS scores were reported per participant characteristic and emotional health questionnaire score counts and percentages.Results Twenty-five adults with SB were recruited, representing 37% of eligible patients. A majority of participants scored positive for at least one symptom cluster of MTS. No trends were noted within the demographic or SB data when compared to MTS scores. There was a trend of increased MTS symptom clusters associated with increased depression, anxiety, and PTSD, and a trend of decreased MTS symptom clusters associated with increased resilience. The narrative analysis yielded three distinct themes: negative hospital environment (sub-themes: feeling unheard, insufficient communication, care delays, and an uncomfortable adult healthcare environment), SB-related condition concerns and complications (sub-themes: adult providers lacking SB knowledge, multiple hospitalizations, pain, urology concerns, skin/bone infections, shunt/neurosurgery care, anxiety about needed procedures and illness severity, and MTS symptom clusters), and positive supports when in the hospital (sub-themes: self-advocacy, resilience, family support, positive patient/provider communication, and positive care outcome).Conclusion Further research with a larger study population is necessary to draw significant conclusions about relationships between demographic and SB data, emotional health, and MTS. However, this study identified opportunities for improving healthcare experiences for this patient population, including facilitating communication, inquiring about potentially traumatic medical experiences, and promoting self-advocacy, self-efficacy, resilience, and familial support.