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Commentary on: Lyon, M. E., Fraser, J. L., Thompkins, J. D., et al (2024). Advance Care Planning for Children With Rare Diseases: A Pilot RCT. Pediatrics, 153(6), e2023064557. https://doi.org/10.1542/peds.2023-064557.
Implications for research and practice Having access to advance care planning, despite social and financial constraints is imperative. It is evident that in the population included in this study, advance care planning was invaluable for those below the 2021 financial poverty line. Further research is required to determine if the current medical model in the USA is meeting the requirements of caregivers and children with rare diseases.
Rare diseases in babies, children and young people (children) are often life-shortening, and children can require constant caregiving. Bösch et al
Commentary on: Chen HW, Cheng SF, Hsiung Y, et al. Training perinatal nurses in palliative communication by using scenario-based simulation: A quasi-experimental study. Nurse Educ Pract. 2024. 75:103885. doi: 10.1016/j.nepr.2024.103885
Implications for practice and research Scenario-based simulation (SBS) is an effective method of enhancing the confidence and competence of nurses supporting families who require perinatal palliative care. Further research should focus on the durability of skills acquired through SBS as well as exploring the impact of SBS on a more diverse sample.
Communication is a cornerstone of nursing practice and fundamental to establishing and maintaining relationships with individuals and their families. Nurses involved in the provision of perinatal palliative care work with women, babies and their families, during pregnancy, delivery and in the neonatal period. Effective therapeutic relationships with women and families empower parents, providing control and validation,
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