End of Life Care in Neonatal Intensive Unite
Condition: Palliative Care
MeSH terms: Death
Study type: Interventional

Summary: 
      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: 
      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.
    

Intervention name(s): Family supportive care in EOLC
Intervention type(s): Behavioral
Intervention description(s): 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.
Allocation: Non-Randomized
Intervention model: Parallel Assignment
Masking: None (Open Label)
Primary purpose: Health Services Research
Keywords: neonatal death; end-of-life care; infants; parents; neonatal intensive care; family-centered care