Abstract
To analyze and compare perspectives on antenatal consultation and decision-making from participants with varying degrees of prematurity experience and clinician-experts. Open-ended interviews structured around topics previously identified by recognized clinician-experts were conducted with participants having different levels of prematurity experience. Analysis used mixed methods (thematic and mental models analysis). Secondary sub-group comparisons were performed, based on degree of experience. Non-clinician participants' (n = 80) perspectives differed regarding: amount and content of information desired, decision-making strategies, and who - parent or clinician - should direct consultations. Most wanted to retain decisional authority, all recognized their emotional limitations and many advocated for deliberation support. Participants worried parents' would regret choosing palliative care contrary to clinicians. Bereaved parents often saw issues differently. Parents approach risk and decision-making for extremely premature infants in a personal fashion. They need personalized support tailored to their unique circumstances, decision-making preferences, and emotions.
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