Characterizing parent language about home respiratory technology for children

This study's objective was to develop a taxonomy of family-centered vocabulary for counseling about pediatric invasive home mechanical ventilation. We analyzed interviews with 38 families who faced decisions about home ventilation by creating, indexing, and organizing a limited data set of excerpts with technology vocabulary. We quantified frequencies and proportions of parent vocabulary used to describe technology and analyzed excerpts for focus (child's vs family's experience) and affective valence. We identified 2299 excerpts referencing medical technology; most described tracheostomies and/or ventilators. Parent vocabulary was consistent with medical jargon instead of lay language. Excerpts were nearly twice as often focused on family (vs child) technology experience. Over half (255/427, 60%) of excerpts with emotional valence were negative, especially regarding family experience of time commitment, adapting homes, and finances. Results demonstrate that parent language about medical technology typically mirrors that of clinicians. Language focus is most frequently about technology impact on the family rather than the child which is counter to most clinician counseling which emphasizes child experience. Emotion associated with family experience was often negative, especially regarding logistical and financial impact. Actionable and balanced language is suggested for healthcare teams working in this space.