'Expert advice' for developing decision support: A qualitative study of women who have experienced periviable birth. Issue 10 (October 2021)

• Record Type: Journal Article
• Authors: Tucker Edmonds, Brownsyne; McKenzie, Fatima; O'Donnell, Betsy; Panoch, Janet; Hoffman, Shelley M.; Kavanaugh, Karen; Kuppermann, Miriam
• Is Part Of: Patient education and counseling. Volume 104:Issue 10(2021)
• Page Start: 2565
• Page End: 2570
• Publication Date: 2021-10
• Subjects: Premature birth -- Perinatal care -- Neonatal intensive care -- Decision making; Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2021.03.003
• Languages: English
• ISSNs: 0738-3991

Abstract

Abstract: Objective: To elicit advice from women who have experienced periviable birth to optimize periviable counseling, care, and decision support. Methods: We conducted a qualitative study among 21 women who experienced periviable deliveries within three years. Using semi-structured interviews, we asked participants what advice they would offer providers and women/families based on their own experiences. Interviews were independently coded by three trained coders. Results: For providers: Participants said to be 'patient' and appreciate the novelty of each family's experience. They suggested being 'realistic' and 'factual'; favored joint OB/Neonatology counseling; and encouraged providers to attend to maternal guilt and self-blame. For women/families: They encouraged asking questions, avoiding the internet, and finding joy in whatever time they had with their child. For hospitals: They advocated for changes to facilitate more mother/baby contact. Conclusion: Providers can support parents by presenting facts, showing empathy and patience, and reassuring women that they are not to blame. This study highlights patient perspectives to improve interactions with providers, optimize women/families' experiences, and advance efforts toward developing patient-centered systems of periviable care. Practice implications: Women who experience periviable birth desire counseling that is empathetic and 'realistic', encouragement to ask questions, and reassurance that outcomes are not their fault. Highlights: Elicited advice from women experienced in periviable delivery to help improve care. Providers should be patient and empathetic, but also "realistic" when counseling. Support women who may experience feelings of self-blame and guilt. Women and families are encouraged to engage, ask questions, and avoid the internet. Institutional efforts are needed to improve time and bonding for mother and baby.