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Mother's Lived Experience During Repair of Long-Gap Esophageal Atresia: A Phenomenological Inquiry

Fleck, Patricia PhD, RN, NNP-BC; Kenner, Carole PhD, RNC, FAAN; Board, Rhonda PhD, RN, CCRN; Mott, Sandra PhD, CPN, RN-BC

Section Editor(s): Dowling, Donna PhD, RN; ; Thibeau, Shelley PhD, RNC-NIC;

doi: 10.1097/ANC.0000000000000415
Original Research

Background: Infants born with long-gap esophageal atresia (LGEA) pose unique physiologic risks in the newborn period. Anatomic and physiologic anomalies require an extended hospitalization with procedural analgesia and sedation that impact the mother's experience of birth, maternal response, and nurturing of her infant.

Purpose: The aim of this study was to understand the meaning of experiences that mothers of infants born with LGEA encounter in the neonatal intensive care unit while their infant undergoes esophageal repair.

Methods: A hermeneutical phenomenological design was used to guide this inquiry. Three mothers were interviewed on 3 separate occasions. The conversations were audio-recorded and transcribed verbatim. The findings were analyzed using fundamental existential lifeworld themes.

Results: The essence that conceptualized the study was “making connections: day-by-day.” Themes that emerged are (a) the many phases; (b) the long and winding road; (c) a new me, my purpose; and (d) our new community.

Implications for Practice: Nurses' knowledge and understanding of maternal experiences of having an infant with LGEA will enable for increased physical closeness, optimizing time spent together to learn their infant's unique personality. Creating partnerships with mothers can enhance our understanding of their perspectives, concerns, needs, and guide interventions.

Implications for Research: Further exploration of family dynamics including fathers, siblings, and contextual factors may illuminate interventions to enhance relationships and communication that may influence developmental outcomes for families of infants with LGEA.

Newborn Intensive Care Unit, Boston Children's Hospital, Boston, Massachusetts (Dr Fleck); School of Nursing, Health, and Exercise Science, The College of New Jersey, Ewing, New Jersey (Dr Kenner); Northeastern University, Boston, Massachusetts (Dr Board); and Cardiovascular and Critical Care Programs, Boston Children's Hospital, Boston, Massachusetts (Dr Mott).

Correspondence: Patricia Fleck, PhD, RN, NNP-BC, Newborn Intensive Care Unit, Boston Children's Hospital, 300 Longwood Ave, Boston, MA 02115 (patricia.fleck@childrens.harvard.edu).

This study was conducted at Boston Children's Hospital, Boston, Massachusetts.

Support was provided in part by the National Association of Neonatal Nurses Small Grant Program to Patricia Fleck.

The authors declare no conflicts of interest.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's Web site (www.advancesinneonatalcare.org).

© 2017 by The National Association of Neonatal Nurses