Background and objectives: Rehabilitation after a child's traumatic brain injury (TBI) occurs in hospital, community, and school settings, requiring coordination of care and advocacy by parents. Our objective was to explore Hispanic parents' experiences during child's transitions of care after TBI.
Methods: We conducted this qualitative study using semistructured interviews. We used a convenient sample of Hispanic parents of children hospitalized for a TBI in a single level I trauma center. Thematic content analysis using iterative deductive coding and triangulation with clinical data was conducted to identify barriers and facilitators for transitions of care.
Results: Fifteen mothers, mostly from rural areas and with limited English proficiency, participated in the study. Obtaining outpatient rehabilitation was difficult. Barriers included lack of therapists and clinical providers close to home, worsened by insufficient transportation and other support resources; poor understanding of child's illness and treatments; and suboptimal communication with clinicians and school administrators. Facilitators included interpreter use, availability of Spanish written information, and receipt of inpatient rehabilitation. Parents of patients discharged to inpatient rehabilitation reported that observing therapies, receiving school discharge plans by hospital-teachers, and coordination of care were facilitators to access outpatient treatments and to support school return. Parents of children discharged from the hospital from acute care reported need of legal services to obtain school services.
Conclusions: Hispanic parents, especially those with limited English proficiency, can face significant challenges accessing TBI outpatient rehabilitation and school resources for their children. Although barriers are multifactorial, efforts to improve communication, parent's TBI education, and care coordination during transitions of care may facilitate a child's reintegration to the community and school.
Copyright © 2020 by the American Academy of Pediatrics.