Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU

Title

Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU

Creator

Baughcum AE; Fortney CA; Winning AM; Dunnells ZDO; Humphrey LM; Gerhardt CA

Publisher

Advances in neonatal care: official journal of the National Association of Neonatal Nurses

Date

2019

Subject

article; bereavement support; clinical article; controlled study; father; female; follow up; human; infant; male; mother; neonatal intensive care unit; perception; personal experience; prospective study; satisfaction; skill; terminal care

Description

BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and may be at greater risk for distress after the death. Despite calls to improve EOL care for children, limited research has examined the EOL experiences of families in the NICU. PURPOSE: We examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU. METHODS/SEARCH STRATEGY: Forty-two mothers and 27 fathers (representing 42 infants) participated in a mixed-methods study between 3 months and 5 years after their infant's death (mean = 39.45 months, SD = 17.19). Parents reported on healthcare satisfaction, unmet needs, and infant symptoms and suffering in the final week of life. FINDINGS/RESULTS: Parents reported high levels of healthcare satisfaction, with relative strengths in providers' technical skills and inclusion of the family. Greater perceived infant suffering was associated with lower healthcare satisfaction and fewer well-met needs at EOL. Parents' understanding of their infant's condition, emotional support, communication, symptom management, and bereavement care were identified as areas for improvement. IMPLICATIONS FOR PRACTICE: Parents value comprehensive, family-centered care in the NICU. Additionally, monitoring and alleviating infant symptoms contribute to greater parental satisfaction with care. Improving staff knowledge about EOL care and developing structured bereavement follow-up programs may enhance healthcare satisfaction and family outcomes. IMPLICATIONS FOR RESEARCH: Prospective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment.

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

December 2019 List

Collection

Citation

Baughcum AE; Fortney CA; Winning AM; Dunnells ZDO; Humphrey LM; Gerhardt CA, “Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU,” Pediatric Palliative Care Library, accessed October 18, 2021, https://pedpalascnetlibrary.omeka.net/items/show/16543.

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