Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU

Title

Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU

Creator

Clark OE; Fortney CA; Dunnells ZDO; Gerhardt CA; Baughcum AE

Publisher

Journal of Pain and Symptom Management

Date

2021

Subject

Neonatal Intensive Care Units; Newborn Infant; bereavement; Cross-Sectional Studies; end of life; grief; Infant; Mothers; NICU; palliative care; Parents; Perception; Pilot Projects; Retrospective Studies

Description

CONTEXT: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on bereaved parents is largely unknown. OBJECTIVE: Explore associations between parental perceptions of infant symptoms and suffering at EOL in the neonatal intensive care unit (NICU) and parent adjustment following the death. METHODS: Retrospective, cross-sectional pilot study involving parents of infants who died within the previous five years in a large, Midwestern, level IV NICU. Parents were recruited through mailed invitations, and 40 mothers and 27 fathers participated from 40 families. Parents retrospectively reported on infant symptom burden and suffering during the last week of life and the Impact of Events Scale-Revised (IES-R), and Prolonged Grief-13 (PG-13). Hierarchical regressions examined demographic/medical factors and parent perceptions at EOL in relation to post-traumatic stress symptoms (PTSS) and prolonged grief (PG). RESULTS: Clinical levels of PTSS (Mothers = 18%; Fathers = 11%) and PG (Mothers and Fathers = 3%) were low. Maternal perception of higher symptom burden was associated with greater PTSS, R2 = 0.46, P= 0.001, and PG, R2 = 0.47, P < 0.01. Paternal perception of greater infant suffering was associated with greater PTSS, R2 = 0.48, P= 0.001, and PG, R2 = .38, P < 0.01. CONCLUSION: Perceptions of symptoms and suffering were associated differently with mother and father adjustment after bereavement. While not necessarily causal, better symptom management at EOL could minimize distress for both infants and their parents.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

Special Edition #1 2022 List

Citation

Clark OE; Fortney CA; Dunnells ZDO; Gerhardt CA; Baughcum AE, “Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU,” Pediatric Palliative Care Library, accessed July 2, 2022, https://pedpalascnetlibrary.omeka.net/items/show/17884.

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