Comfort, benefit, and distress: An exploratory study of research experiences of bereaved parents in the neonatal intensive care unit.

BACKGROUND

Understanding the research experiences of bereaved parents is necessary to advance palliative care.

OBJECTIVE

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.

RESULTS

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

Bereaved NICU parents simultaneously experience distress, comfort, and benefit from research participation.