Support for families of a child in a palliative situation in the cardiac pediatric intensive care unit

Support for families of a child in a palliative situation in the cardiac pediatric intensive care unit

Wieden N; Eissler AB; Kroger Y

Cardiology in the Young

2023

child; female; human; male; Intensive Care Units; patient care; palliative therapy; intensive care; pediatric intensive care unit; nursing; terminal care; Medline; systematic review; Cinahl; satisfaction; rare disease; conference abstract; decision making; memory; holistic care; heart

Background and Aim: The birth prevalence of children with congenital heart disease is about one percent a year. This might mean that a palliative diagnosis maybe directly exists from birth due to the complexity of the congenital heart disease. The required intensive care stay that may follow after birth presents a challenge for parents. To care for the family, the concept of family-centered care is presented and the involvement of the pediatric palliative care team is considered. The aim was to identify nursing measures which support families of a child in a palliative situation in the cardiac pediatric intensive care unit. Method(s): This literature search was conducted between January 1, 2022 and May 31, 2022 in Medline via PubMed, CINAHL and Cochrane research databases and was based on defined inclusion and exclusion criteria. Studies from the PICU and NICU as well as studies focusing on end-of-life care were considered, as it can be assumed that the results may be transferable. Studies with an exclusive oncological focus or specific rare diseases were excluded. Result(s): Seven main categories could be identified to support the parents. The communication, the parental participation in the decision-making process, continuity of care and relationship building. Also the griefing process and memory making takes place. At least challenges in the intensive care unit and satisfaction with care and unmet needs are highlighted. Conclusion(s): The included studies suggest important features of communication and can be partially transferred to the implementation of nursing measures with the help of family-centered care. The necessity of the need to involve parents in the care of the child can be demonstrated in the majority of the studies. Therefore, appropriate communication and parental participation in the whole process should be considered as the focus of care. For holistic care, the involvement of the palliative pediatric care team should be evaluated early. Due to the limitations of the studies and the low level of evidence, the results must be viewed with caution. Further research is needed to comprehensively map the specific area of the cardiac pediatric intensive care.

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