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

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. M...

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Main Authors: Zhang, R., Tang, Q., Zhu, L.H., Peng, X.M., Zhang, N., Xiong, Y.E.E., Chen, M.H., Chen, K.L., Luo, D., Li, X., Latour, Jos
Format: Journal Article
Published: 2022
Online Access:http://hdl.handle.net/20.500.11937/94033
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author Zhang, R.
Tang, Q.
Zhu, L.H.
Peng, X.M.
Zhang, N.
Xiong, Y.E.E.
Chen, M.H.
Chen, K.L.
Luo, D.
Li, X.
Latour, Jos
author_facet Zhang, R.
Tang, Q.
Zhu, L.H.
Peng, X.M.
Zhang, N.
Xiong, Y.E.E.
Chen, M.H.
Chen, K.L.
Luo, D.
Li, X.
Latour, Jos
author_sort Zhang, R.
building Curtin Institutional Repository
collection Online Access
description 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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institution Curtin University Malaysia
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publishDate 2022
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spelling curtin-20.500.11937-940332024-01-24T05:26:42Z 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 Zhang, R. Tang, Q. Zhu, L.H. Peng, X.M. Zhang, N. Xiong, Y.E.E. Chen, M.H. Chen, K.L. Luo, D. Li, X. Latour, Jos 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. 2022 Journal Article http://hdl.handle.net/20.500.11937/94033 10.3389/fped.2022.870382 http://creativecommons.org/licenses/by/4.0/ fulltext
spellingShingle Zhang, R.
Tang, Q.
Zhu, L.H.
Peng, X.M.
Zhang, N.
Xiong, Y.E.E.
Chen, M.H.
Chen, K.L.
Luo, D.
Li, X.
Latour, Jos
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
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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
url http://hdl.handle.net/20.500.11937/94033