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"How's the baby doing?" Struggling with narratives of progress in a neonatal intensive care unit
1Department of Science and Technology Studies, Rensselaer Polytechnic Institute, USA. laynel@rpi.edu
Insights
Parents in neonatal intensive care units (NICUs) use linear progress narratives, like "roller coaster" or "graduation," to understand their critically ill infant’s condition. This study examines how these narratives conflict with the reality of infant health, impacting parental knowledge-making.
Area of Science:
- Medical Sociology
- Parental Experience in Neonatal Intensive Care Units (NICUs)
- Health Communication
Background:
- Parents of critically ill infants in Neonatal Intensive Care Units (NICUs) face complex emotional and informational challenges.
- Understanding infant health trajectories is crucial for parental coping and decision-making.
- Lay prognostication, or parents' attempts to predict their child's future, is a significant aspect of this experience.
Purpose of the Study:
- To explore the
- knowledge-making
- processes of one parent in a NICU setting.
- To investigate how narratives of linear progress influence parental understanding of an infant's condition and prognosis.
- To analyze the discrepancy between linear progress narratives and the volatile reality of infant critical illness.
Main Methods:
- Autobiographical and biographical narrative analysis.
- Examination of common metaphors used by parents (e.g., "roller coaster," "graduation," "course").
- Discourse analysis of knowledge management within the NICU environment.
Main Results:
- Parents frequently employ linear progress metaphors to make sense of their infant's condition.
- A significant gap exists between these linear narratives and the non-linear, unpredictable nature of infant critical illness.
- The NICU environment shapes how parents construct and manage understandings of their child's health.
Conclusions:
- Linear progress narratives, while offering a framework for understanding, can obscure the complexities of infant critical illness.
- The management of these discrepancies is a key feature of parental experience in the NICU.
- Further research is needed on effective communication strategies to support parents navigating uncertain infant prognoses.
Abstract:
In this at once biographical and autobiographical piece (cf. Shapiro 1988), I describe the processes of "knowledge-making" of one neonatal intensive care parent. In particular, I investigate the ways that narratives of linear progress informed my efforts to understand my son's condition and future prospects, that is, to engage in lay prognostication. In examining and comparing the three metaphors most commonly used to describe my son's changing condition-roller coaster, graduation, and course-I explore how the discrepancy between narratives of linear progress and the complex and volatile condition of many premature and/or critically ill babies is discursively managed in a neonatal intensive care unit.