Janvier Annie, Asaad Michael-Andrew, Reichherzer Martin, Cantin Catherine, Sureau Maia, Prince Josée, Luu Thuy Mai, Barrington Keith J
Department of Pediatrics, Université de Montréal, Montréal, Canada; Division of Neonatology, Hôpital Sainte-Justine, Montréal, Canada; CHU Sainte-Justine Research Center, Montréal, Canada; Bureau de l'éthique clinique (BEC), Université de Montréal, Canada; Unité d'éthique clinique, CHU Sainte-Justine, Montréal, Canada; Unité de soins palliatifs, CHU Sainte-Justine, Montréal, Canada; Unité de recherche en éthique clinique et partenariat famille (UREPAF), Canada; Bureau du Partenariat Patients-Familles-Soignants, CHU Sainte-Justine, Montréal, Canada.
Department of Pediatrics, Université de Montréal, Montréal, Canada; Division of Neonatology, Hôpital Sainte-Justine, Montréal, Canada.
Semin Perinatol. 2022 Apr;46(3):151528. doi: 10.1016/j.semperi.2021.151528. Epub 2021 Nov 9.
The philosophy of care in Neonatal Intensive care Units (NICU) has changed with increasing integration of families. We examined parents' and clinicians' perspective about Family Integrated Care (FiCare) in our quaternary NICU. We found that parents and clinicians reported many benefits for families. They were all enthusiastic about FiCare for non-medical items such as changing diapers and skin-to-skin care; for more medical items, such as presenting at rounds, being present during resuscitation or procedures, most physicians wished for more parental involvement, more than other professionals, even parents. All parents described how FiCare benefited them, had empowered them, helped them feel like parents and become a family; but several parents, who could not participate as much or did not want to assume clinical roles, reported feeling guilty. Having a flexible, yet transparent FiCare philosophy is key, as opposed to having homogeneous goals. For example, an aim to have all parents present at rounds in a quality improvement initiative can cause harm to some families. We suggest how to ethically improve FiCare in the best interest of families while minimizing harms. It is important for FiCare not to be "Family Imposed Care." Optimizing FiCare can only be done when parents' priorities guide our actions, while also keeping in mind clinicians' perspectives and respecting the reality of each NICU.
随着家庭参与度的不断提高,新生儿重症监护病房(NICU)的护理理念也发生了变化。我们在我们的四级NICU中研究了家长和临床医生对家庭综合护理(FiCare)的看法。我们发现家长和临床医生报告了家庭综合护理给家庭带来的诸多益处。他们都对FiCare在诸如换尿布和皮肤接触护理等非医疗项目上的应用充满热情;对于更多医疗项目,如在查房时到场、在复苏或操作过程中在场,大多数医生比其他专业人员甚至家长更希望家长能更多地参与其中。所有家长都描述了FiCare如何使他们受益、赋予他们力量、帮助他们感觉自己像父母并成为一个家庭;但有几位家长由于无法充分参与或不想承担临床角色而表示感到内疚。拥有灵活但透明的FiCare理念是关键,而不是有统一的目标。例如,在一项质量改进计划中让所有家长都在查房时到场的目标可能会对一些家庭造成伤害。我们建议如何从伦理角度以家庭的最大利益改进FiCare,同时将危害降至最低。重要的是FiCare不要成为“家庭强加的护理”。只有当家长的优先事项指导我们的行动,同时牢记临床医生的观点并尊重每个NICU的实际情况时,才能优化FiCare。