End of Life Care in Neonatal Intensive Unite

NCT ID: NCT05270915

Last Updated: 2022-03-08

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

45 participants

Study Classification

INTERVENTIONAL

Study Start Date

2020-05-06

Study Completion Date

2021-09-30

Brief Summary

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In China, neonatal death on 2019 was 3.5 per 1000 live births, which counts around 57,000 deaths. In mainland China, parents are mostly the main decision-makers in withdrawing life-sustaining treatments in infants and neonatologists often follow the wishes of the parents. However, there is limited experience in supporting parents after the decision is made to withdraw treatment. The aim of this study was to develop and test a family supportive end-of-life care intervention to decrease parental depression and increase parent satisfaction. Investigators indicated that providing a comfortable environment and supportive care to parents during the final days of life of an infant decrease their depression and increases parent satisfaction. The NICUs in mainland China and beyond might consider involving parents in end-of-life care by providing a single room, have a dedicated psychologist available and provide supportive commemoration materials.

Detailed Description

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

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.

Conditions

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Palliative Care

Study Design

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Allocation Method

NON_RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

HEALTH_SERVICES_RESEARCH

Blinding Strategy

NONE

Study Groups

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Family supportive EOLC

The intervention 'family supportive EOLC' was developed based on the international guidelines of family-centered care (25) with additional aspects of care and support. The investigators designed a separated single-bedded EOLC room for the infant and parents. Other family members, such as grandparents or siblings, were allowed to visit the infant and parents. The design of the room included the option for parents to stay comfortably on a sofa to relax and to play soothing music. Parents were encouraged to stay as long as they want and participate in basic care including physical contact with their infant. The nurses supported the parents in creating commemorative items such as a 'Yuan man' box with photos, baby handprint cards, footprint cards, a lock of hair and other precious memory items. A psychologist, in collaboration with our NICU, and a neonatologist supported the parents by individual interviews.

Group Type EXPERIMENTAL

Family supportive care in EOLC

Intervention Type BEHAVIORAL

The investigators designed a separated single-bedded EOLC room for the infant and parents. Other family members, such as grandparents or siblings, were allowed to visit the infant and parents. The design of the room included the option for parents to stay comfortably on a sofa to relax and to play soothing music. Parents were encouraged to stay as long as they want and participate in basic care including physical contact with their infant. The nurses supported the parents in creating commemorative items such as a 'Yuan man' box with photos, baby handprint cards, footprint cards, a lock of hair and other precious memory items. A psychologist, in collaboration with our NICU, and a neonatologist supported the parents by individual interviews.

The standard EOLC

The standard EOLC included the international guidance of palliative care and EOLC in neonatology (21-23). In China, parents are often the decision-makers of their infant's treatment and the NICU clinicians usually respect the parent's decision (24). After parents have decided to withdraw treatment, standard EOLC is initiated and includes monitoring of vital signs and withholding or withdrawing rescue procedures such as intubation and intravenous infusion. Unnecessary lines are removed and pain management is provided by analgesia. Comfort care is provided by nurses including basic care such as skin care and oral care. After the infant died, the NICU physician informs the parents by phone.

Group Type ACTIVE_COMPARATOR

Family supportive care in EOLC

Intervention Type BEHAVIORAL

The investigators designed a separated single-bedded EOLC room for the infant and parents. Other family members, such as grandparents or siblings, were allowed to visit the infant and parents. The design of the room included the option for parents to stay comfortably on a sofa to relax and to play soothing music. Parents were encouraged to stay as long as they want and participate in basic care including physical contact with their infant. The nurses supported the parents in creating commemorative items such as a 'Yuan man' box with photos, baby handprint cards, footprint cards, a lock of hair and other precious memory items. A psychologist, in collaboration with our NICU, and a neonatologist supported the parents by individual interviews.

Interventions

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Family supportive care in EOLC

The investigators designed a separated single-bedded EOLC room for the infant and parents. Other family members, such as grandparents or siblings, were allowed to visit the infant and parents. The design of the room included the option for parents to stay comfortably on a sofa to relax and to play soothing music. Parents were encouraged to stay as long as they want and participate in basic care including physical contact with their infant. The nurses supported the parents in creating commemorative items such as a 'Yuan man' box with photos, baby handprint cards, footprint cards, a lock of hair and other precious memory items. A psychologist, in collaboration with our NICU, and a neonatologist supported the parents by individual interviews.

Intervention Type BEHAVIORAL

Eligibility Criteria

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Inclusion Criteria

* Infants whose treatment was withdrawn at Corrected Gestational Age (CGA) less than 28 days and their parents.

Exclusion Criteria

* Infants with an expected time of death less than three hours after NICU admission. Parents were excluded if they had mental health or language issues that might limit their integration and communication with the healthcare team.
Minimum Eligible Age

1 Hour

Maximum Eligible Age

3 Months

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Hunan Children's Hospital

OTHER_GOV

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Hunan Children's Hospital

Changsha, Hunan, China

Site Status

Countries

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China

References

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Allen JD, Shukla R, Baker R, Slaven JE, Moody K. Improving Neonatal Intensive Care Unit Providers' Perceptions of Palliative Care through a Weekly Case-Based Discussion. Palliat Med Rep. 2021 Apr 16;2(1):93-100. doi: 10.1089/pmr.2020.0121. eCollection 2021.

Reference Type RESULT
PMID: 34223508 (View on PubMed)

Chen X, Li H, Song J, Sun P, Lin B, Zhao J, Yang C. The Resuscitation of Apparently Stillborn Neonates: A Peek Into the Practice in China. Front Pediatr. 2020 Jun 2;8:231. doi: 10.3389/fped.2020.00231. eCollection 2020.

Reference Type RESULT
PMID: 32582582 (View on PubMed)

Maurer DM, Raymond TJ, Davis BN. Depression: Screening and Diagnosis. Am Fam Physician. 2018 Oct 15;98(8):508-515.

Reference Type RESULT
PMID: 30277728 (View on PubMed)

Nixon N, Guo B, Garland A, Kaylor-Hughes C, Nixon E, Morriss R. The bi-factor structure of the 17-item Hamilton Depression Rating Scale in persistent major depression; dimensional measurement of outcome. PLoS One. 2020 Oct 26;15(10):e0241370. doi: 10.1371/journal.pone.0241370. eCollection 2020.

Reference Type RESULT
PMID: 33104761 (View on PubMed)

Cox JL, Holden JM, Sagovsky R. Detection of postnatal depression. Development of the 10-item Edinburgh Postnatal Depression Scale. Br J Psychiatry. 1987 Jun;150:782-6. doi: 10.1192/bjp.150.6.782.

Reference Type RESULT
PMID: 3651732 (View on PubMed)

Zhang R, Tang Q, Zhu LH, Peng XM, Zhang N, Xiong YE, Chen MH, Chen KL, Luo D, Li X, Latour JM. 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. Front Pediatr. 2022 Jul 22;10:870382. doi: 10.3389/fped.2022.870382. eCollection 2022.

Reference Type DERIVED
PMID: 35935359 (View on PubMed)

Davidson JE, Aslakson RA, Long AC, Puntillo KA, Kross EK, Hart J, Cox CE, Wunsch H, Wickline MA, Nunnally ME, Netzer G, Kentish-Barnes N, Sprung CL, Hartog CS, Coombs M, Gerritsen RT, Hopkins RO, Franck LS, Skrobik Y, Kon AA, Scruth EA, Harvey MA, Lewis-Newby M, White DB, Swoboda SM, Cooke CR, Levy MM, Azoulay E, Curtis JR. Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU. Crit Care Med. 2017 Jan;45(1):103-128. doi: 10.1097/CCM.0000000000002169.

Reference Type BACKGROUND
PMID: 27984278 (View on PubMed)

Silverman WA. A hospice setting for humane neonatal death. Pediatrics. 1982 Feb;69(2):239. No abstract available.

Reference Type BACKGROUND
PMID: 7058104 (View on PubMed)

Kim S, Savage TA, Hershberger PE, Kavanaugh K. End-of-Life Care in Neonatal Intensive Care Units from an Asian Perspective: An Integrative Review of the Research Literature. J Palliat Med. 2019 Jul;22(7):848-857. doi: 10.1089/jpm.2018.0304. Epub 2019 Jan 11.

Reference Type BACKGROUND
PMID: 30632880 (View on PubMed)

Haug S, Dye A, Durrani S. End-of-Life Care for Neonates: Assessing and Addressing Pain and Distressing Symptoms. Front Pediatr. 2020 Sep 24;8:574180. doi: 10.3389/fped.2020.574180. eCollection 2020.

Reference Type RESULT
PMID: 33072678 (View on PubMed)

Dombrecht L, Beernaert K, Chambaere K, Cools F, Goossens L, Naulaers G, Cohen J, Deliens L; NICU consortium. End-of-life decisions in neonates and infants: a population-level mortality follow-back study. Arch Dis Child Fetal Neonatal Ed. 2022 May;107(3):340-341. doi: 10.1136/archdischild-2021-322108. Epub 2021 Jun 15. No abstract available.

Reference Type RESULT
PMID: 34131039 (View on PubMed)

Veldhuijzen van Zanten S, Ferretti E, MacLean G, Daboval T, Lauzon L, Reuvers E, Vadeboncoeur C. Medications to manage infant pain, distress and end-of-life symptoms in the immediate postpartum period. Expert Opin Pharmacother. 2022 Jan;23(1):43-48. doi: 10.1080/14656566.2021.1965574. Epub 2021 Aug 18.

Reference Type RESULT
PMID: 34384318 (View on PubMed)

Related Links

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https://apps.who.int/iris/bitstream/handle/10665/342703/9789240027053-eng.pdf

World Health Organization. World Health Statistics 2021. Monitoring health for the SDGs.

https://www.who.int/news-room/fact-sheets/detail/palliative-care

World Health Organization. Palliative Care. Key Facts.

http://www.nice.org.uk/guidance/ng61

National Institute for Health and Care Excellent (NICE). End of life care for infants, children and young people with life-limiting conditions: planning and management. NICE guideline

Other Identifiers

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HN08

Identifier Type: -

Identifier Source: org_study_id

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