Stories, ethics and the interpretation of meaning: Bearing witness to mothers' stories of their neonatal intensive care unit experience

Abstract

<p>This study grounded in narrative perspectives was conducted to uncover mothers' experience of having a baby in the Neonatal Intensive Care Unit (NICU). The purpose of this study was to describe and interpret mothers NICU experiences, and to sensitize health care professionals about the importance of mothers' personal experience stories. The NICU experience began with mothers' birth experience or the incident that led up to her infant requiring care in the NICU and her experience extended beyond the NICU with future concerns about the health and wellbeing of her baby. Stories of mothers' experience were gleaned from data generated from audio-taped interviews, photographs taken by families, mothers' journals and mothers' NICU memorabilia. Four mothers participated in the study and their interviews were transcribed verbatim and provided the primary text for analysis. Watson's (1985) carative factors provided a theoretical structure for studying and understanding mother's stories. Accordingly, narratives provided a tentative foundation for caring in nursing. Looking at narratives with carative factors in mind helped to delineate them and their importance in helping a nurse to care for another person. Data analysis was guided by narrative inquiry combining structural approaches of Labov and Waletzsky (1967, 1997), and Riessman (2008), adapted from Gee (2005). Analysis also identified narrative features and transcendent themes drawing on approaches outlined by Charon (2006). The first level of reflection identified three core narratives: enchantment, disenchantment and re-enchantment stories. Enchantment stories were stories mothers told about their hopes, dreams and ideals for their first pregnancy, birth and baby. Disenchantment stories were stories that mothers told when things didn't go as planned and babies required care in the NICU. Re-enchantment stories were stories told by mothers about their attempts to create normalcy in the chaos of the NICU. These stories are also about mothers' efforts to create new ideals, hopes and dreams as they create memorable moments and celebrate each new milestone. The second level of reflection revealed descriptions of five narrative features and transcendent themes. The first narrative feature of causality/contingency illuminated the following themes: tears in the fabric of daily life, mourning life as imagined, questions of why? and search for answers. The second narrative feature of temporality illustrated the following themes: rollercoaster, waiting, baby jail or petting zoo? The third narrative feature of singularity identified the following five themes: tailored care, assembly line, desire for normality, burden of depression and prior experience with illness and death. The fourth narrative feature of intersubjectivity gleaned the subsequent themes: encounters with others, earned trust, butterflies and curtains, protecting family and family support. The fifth narrative feature of ethicality, revealed the following transcendent themes: valued responsiveness, vulnerable aspects of life, demonstrating hope and faith and desire to help others. This research makes a case to heath care providers that through narrative understanding, we can maintain a better balance between the highly technological nature of the NICU and also achieve therapeutic relationships with patients by embracing our duties toward individuals. Mothers' stories have the potential to provide moral education, reminding care providers who NICU mothers are, what concerns them and why certain care practices are valuable. These care practices can help guide care providers in what to do next and how to live now. Through narrative understandings, mothers' stories can help sort out what makes some care practices better than others. Implication for health care professionals in practice, education, healthcare policy and research are described.</p>