AUTHOR=Zhang Rong , Tang Qian , Zhu Li-hui , Peng Xiao-ming , Zhang Na , Xiong Yue-e , Chen Mu-hua , Chen Ke-liang , Luo Dan , Li Xun , Latour Jos M. 

TITLE=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

JOURNAL=Frontiers in Pediatrics

VOLUME=Volume 10 - 2022

YEAR=2022

URL=https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2022.870382

DOI=10.3389/fped.2022.870382

ISSN=2296-2360

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. Primary outcomes were depression (Edinburgh Postnatal Depression Scale for mothers; Hamilton Depression rating scale for fathers) and satisfaction. 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 versus 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 their EOLC pathway in Chinese NICUs might decreased their depression after the death of their infant and increase satisfaction. Further research need to focus on long-term effects and expand on larger populations with different cultural backgrounds.