From Lived Experience to Research Questions

This medical humanities research prospectus examines how lived experience documented in The Silence Between Two Heartbeats can generate research questions rather than serve as evidence of medical fact. Using “Six Months Without a Night” as an index case, it examines caregiver uncertainty after NICU discharge when observing movements that may or may not represent seizure activity. The primary research question considers whether safe, practical, non-invasive and clinically validated approaches could support capturing and interpreting abnormal electrographic brain activity at home for high-risk infants. The paper also identifies research questions concerning neonatal care, caregiver observation, family-centered care and post-discharge support. It does not provide medical advice, diagnosis, or evaluation of clinical care.