Waiting for the Other Shoe to Drop: The Lived Experience of Hope for Mothers of Premature Infants in the Neonatal Intensive Care Unit

Abstract

The purpose of this study was to describe the lived experience of hope for mothers of premature infants in the Neonatal Intensive Care Unit (NICU). This study was grounded in the existential-phenomenologic philosophy of Merleau-Ponty. A purposive sample of six mothers of infants born between 23 ½ and 31 weeks gestation were interviewed by the researcher 10 months to 2 ½ years after birth. Mothers were asked to think back to when their infant was in the NICU and tell about a specific time when they were aware of hope. Interviews were transcribed verbatim and analyzed following a hermeneutic process developed by Thomas & Pollio (2002). Data analysis revealed consistent themes across participants. The contextual ground was the World of the NICU—a world in which uncertainty, powerlessness, and the marking of time from admission until discharge were set against the backdrop of an unfamiliar environment perceived as negative by mothers. In this context hope emerged from within the mother-infant relationship. Three themes were figural in the mothers’ experience of hope: 1) hope and the infant, 2) hope and others, and 3) hope and the mother. Mothers took their cues to have hope directly from their infant(s). Discouraging or encouraging events dictated the extent to which mothers felt hopeful. Others had a powerful influence, either supporting or threatening mothers’ fragile hope. Sub-themes in hope and the mother were: 1) lack of knowledge/uncertainty, 2) lack of control/powerlessness, and 3) feeling like a mother. Noteworthy findings included the delayed onset of an awareness of hope—often several weeks after birth. Mothers focused solely on their infants; others became figural as they affected hope within the mother/infant dyad. They appreciated nurses who went the extra mile to encourage hope. The negative attitude or biting words of a single nurse quickly destroyed hope. Mothers rarely mentioned fathers, which suggests their lesser role in supporting hope. Mothers used the internet to reach out to others as there was limited opportunity for parent-to-parent interaction. They felt constrained to interact with other families by the emphasis on privacy related to HIPAA rules

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This paper was published in University of Tennessee, Knoxville: Trace.

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