Abstract
Objective
Neonatal intensive care unit (NICU) admissions are common and rising. Parents with infants in the NICU face difficult decisions about their infants’ care. Few studies have investigated parents’ engagement in NICU decisions and its effects on decision regret.
Study design
We surveyed parents of children who had a NICU stay in the past 3 years. We explored whether sociodemographic characteristics affected preferred decision involvement, shared decision-making with NICU clinicians, or decision regret. Multivariable linear regression analyses examined the relationship between shared decision-making and decision regret.
Results
Most parents preferred an active (212/405, 52.3%) or shared (139/405, 34.3%) approach to decision-making. No sociodemographic characteristics related to preferred decision involvement or shared decision-making (p’s > 0.05). In multivariable analyses, shared decision-making, education and health literacy related to less decision regret (p’s < 0.05).
Conclusions
These data suggest the importance of shared decision-making during NICU stays. Studies should identify ways to support parents through NICU decision-making.
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References
Harrison W, Goodman D. Epidemiologic trends in neonatal intensive care, 2007–2012. JAMA Pediatr. 2015;169:855–62.
Ambalavanan N, Carlo WA, Bobashev G, Mathias E, Liu B, Poole K, et al. Prediction of death for extremely low birth weight neonates. Pediatrics. 2005;116:1367–73.
Partridge JC, Martinez AM, Nishida H, Boo NY, Tan KW, Yeung CY, et al. International comparison of care for very low birth weight infants: parents’ perceptions of counseling and decision-making. Pediatrics. 2005;116:e263–271.
Pector EA. Views of bereaved multiple-birth parents on life support decisions, the dying process, and discussions surround death. J Perinatol. 2004;24:4–10.
Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant end-of-life care: the parents’ perspective. J Perinatol. 2007;27:510–6.
Weiss EM, Xie D, Cook N, Coughlin K, Joffe S. Characteristics associated with preferences for parent-centered decision making in neonatal intensive care. JAMA Pediatr. 2018;172:461–8.
Boss RD, Hutton N, Sulpar LJ, West AM, Donohue PK. Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics. 2008;122:583–9.
Kaempf J, Tomlinson MW, Tuohey J. Extremely premature birth and the choice of neonatal intensive care versus palliative comfort care: an 18-year single-center experience. J Perinatol. 2016;36:190–5.
Madrigal V, Carroll KW, Hexem KR, Faerber JA, Morrison WE, Feudtner C. Parental decision-making preferences in the pediatric intensive care unit. Crit Care Med. 2012;40:2876–82.
Elwyn G, Frosh D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersely P, et al. Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27:1361–7.
Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med. 1997;44:681–92.
Makoul G, Clayman ML. An integrative model of shared decision making in medical encounters. Patient Educ Couns. 2006;60:301–12.
Geurtzen R, Van Heijst A, Hermens R, Scheepers H, Woiski M, Draaisma J, et al. Preferred prenatal counselling at the limits of viability: a survey among Dutch perinatal professionals. BMC Pregnancy Childbirth. 2018;18:1644–6.
Richards CA, Starks H, O’Connor MR, Bourget E, Hays RM, Doorenbos AZ. Physicians perceptions of shared decision-making in neonatal and pediatric critical care. Am J Hosp Palliat Med. 2018;35:669–76.
Axelin A, Outinen J, Lainema K, Lehtonen L, Franck LS. Neonatologists can impede or support parents’ participation in decision-making during medical rounds in the neonatal intensive care units. Acta Paediatr. 2018;107: https://doi.org/10.1111/apa.14386.
Keenan HT, Doron MW, Seyda BA. Comparison of mothers’ and counselors’ perceptions of predelivery counseling for extremely premature infants. Pediatrics. 2005;116:104–11.
Orfali K, Gordon EJ. Autonomy gone awry: a cross-cultural study of parents’ experiences in neonatal intensive care units. Theor Med Bioeth. 2004;25:329–65.
Berinsky AJ, Huber GA, Lenz GS. Evaluating online labor markets for experimental research: Amazon.com’s Mechanical Turk. Political Anal. 2012;20:351–68.
Kriston L, Scholl I, Holzel L, Loh A, Harter M. The 9-item Shared Decision Making Questionnaire (SDM-Q-9). Development and psychometric properties in a primary care sample. Patient Educ Couns. 2010;80:94–9.
O’Connor AM, Drake ER, Fiset V, Graham ID, Laupacis A, Tugwell P. The Ottawa patient decision aids. Eff Clin Pract. 1999;2:163–70.
Degner LF, Sloan JA, Venkatesh P. The Control Preferences Scale. Can J Nurs Res. 1997;29:21–43.
Morris NS, Maclean CD, Chew LD, Littenberg B. The signle item literacy screener: evaluation of a brief instrument to identify limited reading ability. BMC Fam Pract. 2006;21:1–7.
Smith SK, Dixon A, Trevena L, Nutbeam D, McCaffery KJ. Exploring patient involvement in healthcare decision making across different education and functional health literacy groups. Soc Sci Med. 2009;69:1805–12.
Lupton D. Cosumerism, reflexivity and the medical encounter. Soc Sci Med. 1997;45:373–81.
Baker DW, Parker RM, Williams MV, Pitkin K, Parikh NS, Coates W, et al. The health care experience of patients with low literacy. Arch Fam Med. 1996;5:329–34.
Cummings J.Committee on Fetus and Newborn Antenatal counseling regarding resuscitation and intensive care before 25 weeks of gestation. Pediatrics. 2015;136:588–95.
Campbell DE, Fleishman AR. Limits of viability: dilemmas, decisions, and decision makers. Am J Perinatol. 2001;18:117–28.
Haslam D, Manek N. Whose illness is it anyway? BMJ Opinion. 2019 [cited 20 May 2019]. https://blogs.bmj.com/bmj/2019/05/17/david-haslam-and-nishma-manek-whose-illness-is-it-anyway/.
Baumann-holzle R, Maffezzoni M, Ulrich Bucher H. A framework for ethical decision making in neonatal intensive care. Acta Paediatr. 2005;94:1777–83.
Kenner C, Press J, Ryan D. Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach. J Perinatol. 2015;35:S19–S23.
Dudek-Shriber L. Parent stress in the neonatal intensive care unit and the influence of parent and infant characteristics. Am J Occup Ther. 2004;58:509–20.
Hagen EW, Sadek-Badawi M, Albanese A, Palta M. A comparison of Wisconsin Neonatal Intensive Care Units with National data on outcomes and practices. WMJ. 2008;107:320–6.
Clifford S, Jewell RM, Waggoner PD. Are samples drawn from Mechanical Turk valid for research on political ideology? Res Politics. 2015;2:1–9.
Casler K, Bickel L, Hackett E. Separate but equal? A comparison of participants and data gatered via Amazaon’s MTurk, social media, and face-to-face behavioral testing. Comput Hum Behav. 2013;29:2156–60.
Jeong M, Zhang D, Morgan J, Cornacchione Ross J, Osman A, Boynton M, et al. Similarities and differences in tobacco control research findings from convenience and probability samples. Ann Behav Med. 2019;53:476–85.
Joseph-Williams N, Edwards A, Elwyn G. The important and complexity of regret in the measurement of ‘good’ decisions: a systemic review and a content analysis of existing assessment instruments. Health Expect. 2011;14:59–83.
Acknowledgements
The authors would like to thank the division of newborn medicine for financially supporting payment of participants. We would also like to thank Barbara Warner, MD for her input on this study.
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Soltys, F., Philpott-Streiff, S.E., Fuzzell, L. et al. The importance of shared decision-making in the neonatal intensive care unit. J Perinatol 40, 504–509 (2020). https://doi.org/10.1038/s41372-019-0507-6
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DOI: https://doi.org/10.1038/s41372-019-0507-6
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