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Case Reports
. 2022 Jul 22:10:870382.
doi: 10.3389/fped.2022.870382. eCollection 2022.

Testing a Family Supportive End of Life Care Intervention in a Chinese Neonatal Intensive Care Unit: A Quasi-experimental Study With a Non-randomized Controlled Trial Design

Rong Zhang  1 , Qian Tang  2   3 , Li-Hui Zhu  2 , Xiao-Ming Peng  1 , Na Zhang  2   3 , Yue-E Xiong  2   3 , Mu-Hua Chen  1 , Ke-Liang Chen  1 , Dan Luo  2 , Xun Li  4 , Jos M Latour  2   5
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Case Reports

Testing a Family Supportive End of Life Care Intervention in a Chinese Neonatal Intensive Care Unit: A Quasi-experimental Study With a Non-randomized Controlled Trial Design

Rong Zhang et al. Front Pediatr. .

Abstract

Background: Neonatal death often occurs in tertiary Neonatal Intensive Care Units (NICUs). In China, end-of-life-care (EOLC) does not always involve parents.

Aim: The aim of this study is to evaluate a parent support intervention to integrate parents at the end of life of their infant in the NICU.

Methods: A quasi-experimental study using a non-randomized clinical trial design was conducted between May 2020 and September 2021. Participants were infants in an EOLC pathway in the NICU and their parents. Parents were allocated into a family supportive EOLC intervention group or a standard EOLC group based on their wishes. The primary outcomes depression (Edinburgh Postnatal Depression Scale for mothers; Hamilton Depression rating scale for fathers) and Satisfaction with Care were measured 1 week after infants' death. Student t-test for continuous variables and the Chi-square test categorical variables were used in the statistical analysis.

Results: In the study period, 62 infants died and 45 infants and 90 parents were enrolled; intervention group 20 infants, standard EOLC group 25 infants. The most common causes of death in both groups were congenital abnormalities (n = 20, 44%). Mean gestational age of infants between the family supportive EOLC group and standard EOLC group was 31.45 vs. 33.8 weeks (p = 0.234). Parents between both groups did not differ in terms of age, delivery of infant, and economic status. In the family support group, higher education levels were observed among mother (p = 0.026) and fathers (p = 0.020). Both mothers and fathers in the family supportive EOLC group had less depression compared to the standard EOLC groups; mothers (mean 6.90 vs. 7.56; p = 0.017) and fathers (mean 20.7 vs. 23.1; p < 0.001). Parents reported higher satisfaction in the family supportive EOLC group (mean 88.9 vs. 86.6; p < 0.001).

Conclusions: Supporting parents in EOLC in Chinese NICUs might decreased their depression and increase satisfaction after the death of their infant. Future research needs to focus on long-term effects and expand on larger populations with different cultural backgrounds.

Clinical trial registration: www.ClinicalTrials.gov, identifier: NCT05270915.

Keywords: Neonatal Intensive Care Unit; end-of-life care; family-centered care; infants; neonatal death; parents.

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Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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Figure 1
Study flow chart.
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