Communication and Decision Making in Neonatal Intensive Care: Why Narrative Medicine Matters
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Abstract
Objective: This paper aims to analyse parents’ and health professionals’ discourse, regarding four main areas: (1) the experience of care; (2) communication among all stakeholders; (3) ethical issues; (4) and ethical decision-making. Methodology: The authors collected 62 narratives from health professionals and parents whose newborns have been hospitalized for at least 15 days in the neonatal intensive care unit (NICU). We carried out a qualitative content analysis with the support of NVivo software version 12 Pro. Results: The feelings/emotions are present in a high percentage of narratives (mostly negative ones). Parents´ learning emphasizes coping strategies. Most narratives focus on communicational aspects. Decision-making is referred to in almost half of the narratives. The ethical issues and questions mentioned are mainly related to decision-making. Conclusion: The present study emphasizes narrative relevance in the alignment of parents´ and health professionals´ perspectives to promote therapeutic relationships.
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Arzani, A., Valizadeh, L., Zamanzadeh, V., & Mohammadi, E. (2015). Mothers’ strategies in handling the prematurely born infant: a qualitative study. Journal of Caring Sciences, 4(1), 13-24. https://doi.org/10.5681/jcs.2015.002
Beals, D. (2016). Neonatal bioethics. In T. L. Gomella, M. D. Cunningham, & F. G. Eyal (Eds.), Neonatology: Management, procedures, on-call problems, diseases, and drugs (pp. 221-226). McGrawHill.
Cassel, E. (2011). The nature of suffering and the goal of the medicine. Oxford Scholarship Online. https://doi.org/10.1093/acprof:oso/9780195156164.001.0001
Charon, R. (2001). Narrative medicine: Form, function, and ethics. Annals of Internal Medicine, 134(1), 83-87. https://doi.org/10.7326/0003-4819-134-1-200101020-00024
Clarke-Pounder, J. P., Boss, R. D., Roter, D. L., Hutton, N., Larson, S., & Donohue, P. K. (2015). Communication intervention in the neonatal intensive care unit: Can It backfire? Journal of Palliative Medicine, 18(2), 157-161. https://doi.org/10.1089/jpm.2014.0037
Fioretti C., Mazzocco, K., Riva, S., Oliveri, S., Masiero, M., & Pravettoni, G. (2016). Research studies on patients’ illness experience using the Narrative Medicine approach: a systematic review. BMJ Open 6(7), 1-9. http://doi:10.1136/bmjopen-2016-011220
Gracia, D. (2003). Ethical case deliberation and decision making. Medicine, Health Care, and Philosophy, 6(3), 227-233. https://doi.org/10.1023/A:1025969701538
Hawley, S. T., & Morris, A. M. (2017). Cultural challenges to engaging patients in shared decision making. Patient Education and Counseling, 100(1), 18–24. https://doi.org/10.1016/j.pec.2016.07.008
Hurwitz, B., & Spinozzi, P. (2011). Narrative (in) medicine. In: Spinozzi, P., & Hurwitz, B. (Eds.), Discourses and narrations in the biosciences (pp. 73–87). Vandenhoeck & Ruprecht Unipress.
Lakoff, G., & Johnson, M. (2003). Metaphors we live by. The University of Chicago Press.
Lantos, J. D. (2018). Ethical problems in decision making in the neonatal ICU. New England Journal of Medicine, 379(19), 1851–1860. https://doi.org/10.1056/NEJMra1801063
Lefkowitz, D. S., Baxt, C., & Evans, J. R. (2010). Prevalence and correlates of posttraumatic stress and postpartum depression in parents of infants in the neonatal intensive care unit (NICU). Journal of Clinical Psychology in Medical Settings, 17(3), 230–237. https://doi.org/10.1007/s10880-010-9202-7
Levetown, M. (2008). Communicating with children and families: From everyday interactions to skill in conveying distressing information. Pediatrics, 121(5), 1441-1460. https://doi.org/10.1542/peds.2008-0565
Lieblich, A., Tuval-Mashiach, R. & Zilber, T. (1998). Narrative Research: Reading, Analysis, and Interpretation. SAGE. https://doi.org/10.4135/9781412985253
Murphy, J. W., Choi, J. M., & Cadeiras, M. (2017). The role of clinical records in narrative medicine: A discourse of message. The Permanente Journal, 20(2), 103–108. https://doi.org/10.7812/TPP/15-101
Poirier, S. (1999). Voice: Structure, politics, and values in the medical narrative. HEC Forum, 11(1), 27-37. https://doi.org/10.1023/a:1008852301505
Poirier, J., Clapier-Valladon, S., & Raybaut, P. (1995). Histories of life: theory and practice. Celta Ed.
Purdy, I. B., & Wadhwani, R. T. (2006). Embracing bioethics in neonatal intensive care, part II: Case histories in neonatal ethics. Neonatal Network, 25(1), 43–53. https://doi.org/10.1891/0730- 0832.25.1.43
Squire, C., Andrews, M., Davis, M., Esin, C., Harrison, B., Hyden, L., & Hyden, M. (2014). What is narrative research? Bloomsburry Academic Ed.
Tekiner, H. (2017). Ethical considerations related to narrative medicine. In O. Sayligil (Ed.), Patient centered medicine (pp. 161-175). Intech Open. https://doi.org/10.5772/66167
Weiss, E. M., Barg, F. K., Cook, N., Black, E., & Joffe, S. (2016). Parental decision-making preferences in neonatal intensive care. Journal of Pediatrics, 179, 36-41. https://doi.org/10.1016/j.jpeds.2016.08.030
Wigert, H., Blom, M. D., & Bry, K. (2014). Parents’ experiences of communication with neonatal intensive-care unit staff: An interview study. BMC Pediatrics, 14(1), 1–8. https://doi.org/10.1186/s12887-014-0304-5
Zonza, M. (2012). Narrative based medicine and neonatology: An interpretative approach. Journal of Pediatric and Neonatal Individualized Medicine, 1(1), 49–52. https://doi.org/10.7363/010114