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Bereavement Support for Siblings after Neonatal Loss: an Online Survey of U.S. Training Centers
Katie Tillhof1, Katie Krawzak2, Jennifer Batza1
1Evanston Hospital, NorthShore University HealthSystem, Evanston, Illinois.
Insights
Bereavement support for siblings of neonatal intensive care unit patients is limited, but palliative care teams enhance sibling education and support. Formalizing communication with outpatient physicians is recommended for improved care.
Area of Science:
- Neonatalogy
- Pediatric Palliative Care
- Bereavement Studies
Background:
- Unprocessed grief in siblings of neonatal intensive care unit (NICU) patients can have adverse effects.
- There is limited information and support available for children whose newborn siblings die.
Purpose of the Study:
- To examine bereavement support services for siblings of patients who die in the NICU.
- To assess clinicians' attitudes toward support interventions, challenges, and center characteristics.
Main Methods:
- An anonymous online survey was distributed to nurse managers at 81 U.S. NICUs.
- Participants identified knowledgeable individuals to complete the survey on bereavement support.
- Chi testing and odds ratios compared centers with and without palliative care teams (PCTs).
Main Results:
- Most NICUs permitted perimortem sibling visitation, but challenges included limited resources and direct sibling contact.
- Centers with PCT involvement reported significantly higher chances of providing direct education to siblings (OR, 7.7).
- Notification of pediatricians was more common in PCT-involved centers, yet many centers lacked a designated individual for communication.
Conclusions:
- Efforts are made to involve siblings in bereavement activities despite limited direct contact.
- Palliative care teams can enhance direct education for bereaved siblings.
- Formalizing communication with outpatient physicians is crucial for supporting siblings after a NICU death.
Objective:
The aim of this study was to examine bereavement support for siblings of patients who die in the neonatal intensive care unit (NICU) given the adverse effects of unprocessed grief and the paucity of information on children whose newborn siblings die STUDY DESIGN: This was an anonymous online original survey assessing pre-COVID-19 pandemic bereavement services for NICU families, clinicians' attitudes toward support interventions, challenges, and center characteristics. In spring 2020, nurse managers at 81 U.S. centers with neonatology and maternal-fetal medicine fellowship programs were asked to identify the individual most knowledgeable in their NICU's bereavement support services; these individuals were invited by email to complete an original online survey. Chi testing and odds ratios (ORs) compared responses from centers reporting involvement of palliative care teams (PCT) in NICU sibling bereavement versus no PCT.
Results:
Fifty-six percent (45 of 80) of invitees responded. Most (77%) NICUs permitted perimortem sibling visitation. Challenges included sparse community resources and limited direct sibling contact. Sixty-nine percent (n = 31) of centers were grouped as PCT. PCT respondents reported eightfold higher chances of providing direct education to the sibling (OR, 7.7; 95% confidence interval, 1.7-34; p = 0.01). Views on appropriateness of sharing educational information with extended family, babysitters, and teachers did not differ. While notifying pediatricians of families experiencing NICU death was more common in PCT (p = 0.02), most respondents reported having "no individual responsible for such communications" (52% PCT vs. 100%, p = 0.001).
Conclusion:
Despite limited direct contact with siblings of NICU patients who die, efforts are made to involve them in bereavement activities. Opportunities to support these children were identified. Where available, palliative care teams can help provide bereaved siblings with direct education. We recommend formalizing communication mechanisms to ensure that if a NICU patient dies and has surviving siblings, the outpatient physicians caring for these siblings are informed.
Key Points:
· Palliative care enhanced sibling support.. · Resource and visitation limits hinder support.. · Teams sporadically briefed siblings' physicians..
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