Publication
Comfort, benefit, and distress: An exploratory study of research experiences of bereaved parents in the neonatal intensive care unit
Lin M, Williams D, Vitcov G, Sayeed S, DeCourcey D, Wolfe J, Cummings C · Journal of Perinatology · 2026
Background: Understanding the research experiences of bereaved parents is necessary to advance palliative care. Objective(s): To evaluate levels of and factors associated with bereaved parent comfort, benefit, and distress from research participation and to qualitatively explore research experiences. Study design: Exploratory analysis of survey data from parents of infants who died in a level IV NICU (2010-2020). Fisher's exact and Chi-square tests were used to identify factors associated with parental comfort, distress, and benefit. Qualitative analyzed was performed using the constant comparative method. Result(s): 40/146 parents (27%) responded. 83% reported being "very comfortable" or "comfortable", 83% reported "some" to "a lot" of benefit, 26% reported "a great deal" to "a lot" of distress from participation. Goal-discordant care was significantly associated with distress. Research participation themes included "helping others", "processing experiences" and "re-living negative experiences". Conclusion(s): Bereaved NICU parents simultaneously experience distress, comfort, and benefit from research participation.Copyright © The Author(s), under exclusive licence to Springer Nature America, Inc. 2026.
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