Xiaolin Zhou, Xuezhen Chen, Pinggan Li, Xiangyang Luo, Xiaomei Zeng
In this small, exploratory retrospective case series, narrative medicine interventions were temporally associated with favourable trends in neurological outcomes, parental psychological states, and provider well-being. The proposed concepts of clinical narrative signals, a window of narrative intervention, and bidirectional healing offer a preliminary framework for integrating narrative practices into pediatric neurocritical care. These findings are hypothesis-generating and warrant prospective investigation in larger controlled studies.
BACKGROUND: Pediatric anti-NMDAR encephalitis can cause severe disability and profound caregiver distress. Narrative medicine has been proposed as a humanistic intervention, but its impact across the complete caregiving triad of children, parents, and healthcare providers has not been systematically evaluated. This exploratory study aimed to assess the multidimensional impact of narrative medicine interventions in this setting.
METHODS: This retrospective mixed-methods study included five children with severe anti-NMDAR encephalitis (admission mRS ≥4), their mothers, two physicians, and six nurses. Narrative medicine interventions included daily bedside narrative attention, parallel chart writing, family conferences, nurse-led narrative communication, and weekly sharing sessions. Quantitative outcomes included child mRS, parental anxiety (SAS), depression (SDS), caregiver burden (ZBI), and provider empathy (IRI), burnout (NBS), and meaningful work (WAMI). Qualitative data from parallel charts, reflective writings, and family interviews were analyzed thematically.
RESULTS: All five children showed favourable neurological improvement (median mRS: 5→1 at 6 months; p=0.039); three returned to school. Parental outcomes showed substantial improvements: SAS (42.8→23.4, p<0.001, d=9.7), SDS (54.8→27.4, p<0.001, d=6.5), and ZBI (59.6→29.6, p<0.001, d=3.4). Nurses (n=6) showed increased empathy (IRI: 63.7→78.0, p=0.003, d=1.9) and reduced burnout (NBS: 73.0→56.3, p=0.002, d=2.1); physicians showed parallel improvements. Thematic analysis identified three potential mechanisms: clinical narrative signals, a window of narrative intervention (weeks 2-4), and bidirectional healing.
CONCLUSION: In this small, exploratory retrospective case series, narrative medicine interventions were temporally associated with favourable trends in neurological outcomes, parental psychological states, and provider well-being. The proposed concepts of clinical narrative signals, a window of narrative intervention, and bidirectional healing offer a preliminary framework for integrating narrative practices into pediatric neurocritical care. These findings are hypothesis-generating and warrant prospective investigation in larger controlled studies.