Gathering feedback from families following the death of their baby

Many parents who have experienced bereavement want to offer feedback to ensure lessons are learned and good practice is shared. This can be instrumental to inform improvements in care.

The Maternity Bereavement Experience Measure (MBEM) questionnaire and supporting resource was created collaboratively by Sands, NHS England and the London Maternity Clinical Network. The questionnaire is designed to seek feedback from bereaved parents where a baby or babies have died during pregnancy or shortly after birth.

Full document: Gathering feedback from families following the death of their baby.  A resource to support professionals in maternity care.

Retrospective cohort study of all deaths among infants born between 22 and 27 completed weeks of gestation

The aim of this research is to assess causes and circumstances of deaths in extremely low gestational age neonates (ELGANs) born in Switzerland over a 3-year period | BMJ Open

Design: Population-based, retrospective cohort study.

Setting: All nine level III perinatal centres (neonatal intensive care units (NICUs) and affiliated obstetrical services) in Switzerland.

Patients: ELGANs with a gestational age (GA) <28 weeks who died between 1 July 2012 and 30 June 2015.

Results: A total of 594 deaths were recorded with 280 (47%) stillbirths and 314 (53%) deaths after live birth. Of the latter, 185 (59%) occurred in the delivery room and 129 (41%) following admission to an NICU. Most liveborn infants dying in the delivery room had a GA ≤24 weeks and died following primary non-intervention. In contrast, NICU deaths occurred following unrestricted life support regardless of GA. End-of-life decision-making and redirection of care were based on medical futility and anticipated poor quality of life in 69% and 28% of patients, respectively. Most infants were extubated before death (87%).

Conclusions: In Switzerland, most deaths among infants born at less than 24 weeks of gestation occurred in the delivery room. In contrast, most deaths of ELGANs with a GA ≥24 weeks were observed following unrestricted provisional intensive care, end-of-life decision-making and redirection of care in the NICU regardless of the degree of immaturity.

Full reference: Berger, T.M. et al. (2017) Retrospective cohort study of all deaths among infants born between 22 and 27 completed weeks of gestation in Switzerland over a 3-year period. BMJ Open. 7:e015179

UK maternity care

MBRRACE-UK has published Saving Lives, Improving Mothers’ Care: Surveillance of maternal deaths in the UK 2012–14 and lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2009–14.

The report presents the findings of maternal mortality surveillance 2012 to 2014 in the UK and the lessons learned from the confidential enquiries into maternal deaths from cardiovascular causes, blood pressure disorders of pregnancy, early pregnancy causes together with messages for critical care.

MBRRACE-UK Maternal Report 2016 – Full Report

MBRRACE-UK Maternal Report 2016 – Lay Summary

Additional link: RCOG press release

Parents’ experience of a follow-up meeting after a child’s death in the Paediatric Intensive Care Unit

Brink, H.L. et al. Intensive and Critical Care Nursing. Published online: 12 August 2016

Objective: ‘To identify parents’ experience of a follow up meeting and to explore whether the conversation was adequate to meet the needs of parents for a follow-up after their child’s death in the Paediatric Intensive Care Unit (PICU).

Design and setting: Qualitative method utilising semi-structured interviews with six pairs of parents 2–12 weeks after the follow-up conversation. The interviews were held in the parents’ homes at their request. Data were analysed using a qualitative, descriptive approach and thematic analysis.

Findings: Four main themes emerged: (i) the way back to the PICU; (ii) framework; (iii) relations and (iv) closure.

Conclusion: The parents expressed nervousness before the meeting, but were all pleased to have participated in these follow-up meetings. The parents found it meaningful that the follow-up meeting was interdisciplinary, since the parents could have answers to their questions both about treatment and care. It was important that the staff involved in the follow-up meeting were those who had been present through the hospitalisation and at the time of the child’s death. Parents experienced the follow-up meeting as being a closure of the course in the PICU, regardless the length of the hospitalisation.

Read the abstract here

Factors influencing the uptake of neonatal bereavement support services

factors

image source: springer.com

Background
Research on perinatal bereavement services is limited. The aim of the study was to compare the uptake of bereavement support services between two tertiary neonatal units (NNU), and to investigate influencing factors.

Method
The medical and bereavement records of all neonatal deaths were studied from January 2006 to December 2011. Data collected included parent and baby characteristics, mode of death, consent for autopsy and bereavement follow-up. The categorical data were compared by chi-square or Fisher’s exact test and continuous data by Wilcoxon signed-rank test; a multivariable regression analysis was performed using STATA 12.0.

Results
The neonatal deaths of 297 babies (182 in NNU1 and 115 in NNU2) with full datasets were analysed. Baby characteristics were similar between units except for lower median gestational age in NNU1 (p = 0.03). Significantly more NNU1 parents were non-Caucasian (p < 0.01), from lower socio-economic status (p = 0.01) and had previous stillbirth/miscarriage (p = 0.03). More babies had care withdrawn in NNU2 (p < 0.01). A significantly higher proportion of parents from NNU1 (61 %) attended bereavement follow-up compared to NNU2 (34 %; p < 0.01).

On multivariable analysis, significantly more parents who were married or co-habiting (p = 0.02) and consented for an autopsy (p = 0.01) attended bereavement services.

Conclusion
Uptake of bereavement services varied between the two NNUs, which could be due to differences in the ethnic and socio-economic mix of the population. Significantly more parents who were married or co-habiting, or consented for autopsy, attended bereavement follow up services.

Full reference: Banerjee, J et. al.  Factors influencing the uptake of neonatal bereavement support services – Findings from two tertiary neonatal centres in the UK | BMC Palliative Care | 29 June 2016