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 Zhang1, Qian Tang2,3, Li-Hui Zhu2
1Department of Neonatology, Hunan Children's Hospital, Changsha, China.
Insights
A parent support intervention in Neonatal Intensive Care Units (NICUs) reduced parental depression and increased satisfaction following infant death. This study highlights the importance of integrating parents into end-of-life care (EOLC) decisions.
Area of Science:
- Neonatal Intensive Care Unit (NICU) care
- Pediatric end-of-life care (EOLC)
- Parental mental health outcomes
Background:
- Neonatal mortality frequently occurs in tertiary Neonatal Intensive Care Units (NICUs).
- Parental involvement in end-of-life care (EOLC) in Chinese NICUs is often limited.
- This study evaluated a parent support intervention to integrate parents into infant EOLC within the NICU.
Observation:
- A quasi-experimental study involved 45 infants and 90 parents in an EOLC pathway.
- Parents were assigned to either a family supportive EOLC intervention or standard EOLC group.
- Congenital abnormalities were the most common cause of death (44%).
Findings:
- Parents in the family supportive EOLC group reported significantly lower depression scores (mothers: p=0.017; fathers: p<0.001).
- Satisfaction with care was significantly higher in the family supportive EOLC group (p<0.001).
- Higher education levels were noted in the family supportive EOLC group.
Implications:
- Integrating a parent support intervention into NICU EOLC may improve parental mental health and care satisfaction.
- Future research should explore long-term effects and diverse cultural contexts.
- This approach can enhance family-centered care during critical infant end-of-life experiences.
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.
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