Franck Linda S, McNulty Alison, Alderdice Fiona
University of California, San Francisco (Dr Franck); TinyLife Charity, Belfast, UK (Ms McNulty); and Queen's University, Belfast and National Perinatal Epidemiology Unit, University of Oxford, UK (Dr Alderdice).
J Perinat Neonatal Nurs. 2017 Jul/Sep;31(3):244-255. doi: 10.1097/JPN.0000000000000273.
Preterm birth is traumatic for parents, but there are few reports of parents' views on how the healthcare journey can be improved. This secondary thematic analysis used focus group data from parent consultation on proposed neonatal services standards for Northern Ireland to discover parents' experiences and recommendations for the perinatal, neonatal, and home care phases. Parents of preterm infants (n = 40) described their healthcare journey as positive overall and were grateful for the caring and competent care providers they encountered. However, parents described experiences that varied in quality and family centeredness across the care journey from perinatal to home care. They noted inconsistencies in healthcare team communication and provider practices and reported receiving limited emotional and practical support at all phases. In the perinatal phase, parents described difficult situations of discovering medical problems leading to preterm birth. In the neonatal intensive care unit phase, they also experienced unmet needs for involvement in decision making, financial strain, and difficulty coping with transfers and discharge. Parents experienced emotional challenges and lack of support in the home care phase. Parents identified actions that health systems can take to improve the consistency of care and communication across all phases and settings to encourage better collaboration and transitions in care.
早产对父母来说是一种创伤，但很少有关于父母对如何改善医疗保健过程看法的报道。这项二次主题分析使用了来自北爱尔兰新生儿服务标准家长咨询焦点小组的数据，以了解父母在围产期、新生儿期和家庭护理阶段的经历及建议。早产婴儿的父母（n = 40）总体上将他们的医疗保健过程描述为积极的，并对他们遇到的关爱且称职的护理人员表示感激。然而，父母们描述了从围产期到家庭护理的整个护理过程中质量和以家庭为中心程度各不相同的经历。他们指出医疗团队沟通和医护人员做法存在不一致之处，并报告称在各个阶段获得的情感和实际支持都有限。在围产期，父母描述了发现导致早产的医疗问题时的艰难处境。在新生儿重症监护病房阶段，他们还经历了参与决策的需求未得到满足、经济压力以及应对转院和出院的困难。父母们在家庭护理阶段经历了情感挑战且缺乏支持。父母们确定了卫生系统可以采取的行动，以提高所有阶段和环境中护理和沟通的一致性，鼓励更好的协作和护理过渡。
