Clinical Sciences Theme, Murdoch Childrens Research Institute, Parkville, Victoria, Australia
Newborn Research, The Royal Women's Hospital, Parkville, Victoria, Australia.
BMJ Open. 2021 Nov 26;11(11):e044836. doi: 10.1136/bmjopen-2020-044836.
Neonatal conditions can have lifelong implications for the health and well-being of children and families. Traditionally, parents and patients have not been included in shaping the agenda for research and yet they are profoundly affected by the neonatal experience and its consequences. This study aimed to identify consensus research priorities among parents/patients of newborn medicine in Australia and New Zealand.
Parents/patients with experience of neonatal care in Australia and New Zealand completed an online Delphi study to identify research priorities across four epochs (neonatal admission, early childhood, childhood/adolescence and adulthood). Parents/patients first generated key challenges in each of these epochs. Through inductive thematic analysis, recurring topics were identified and research questions generated. Parents/patients rated these questions in terms of priorities and a list of questions consistently rated as high priority was identified.
393 individuals participated, 388 parents whose children had received neonatal care and 5 adults who had received neonatal care themselves.
Many research questions were identified as high-priority across the lifespan. These included how to best support parental mental health, relationships between parents and neonatal clinical staff (including involvement in care and communication), bonding and the parent-child relationship, improving neonatal medical care and addressing long-term impacts on child health and neurodevelopment.
Parents with experience of newborn medicine have strong, clear and recurring research priorities spanning neonatal care practices, psychological and other impacts on families, and impacts on child development. These findings should guide neonatal research efforts. In addition to generating new knowledge, improved translation of existing evidence to parents is also needed.
新生儿状况可能对儿童和家庭的健康和幸福产生终身影响。传统上，父母和患者并未参与制定研究议程，但他们深受新生儿经历及其后果的影响。本研究旨在确定澳大利亚和新西兰新生儿医学领域的父母/患者的共识研究重点。
有澳大利亚和新西兰新生儿护理经验的父母/患者完成了一项在线德尔菲研究，以确定四个时期（新生儿入院、幼儿期、儿童/青少年期和成年期）的研究重点。父母/患者首先在每个时期确定关键挑战。通过归纳主题分析，确定了反复出现的主题并生成了研究问题。父母/患者根据优先级对这些问题进行评分，并确定了一份一致评为高优先级的问题清单。
共有 393 人参与，其中 388 人为其接受过新生儿护理的子女的父母，5 人为自己接受过新生儿护理的成年人。
在整个生命周期中，确定了许多高优先级的研究问题。这些问题包括如何最好地支持父母的心理健康、父母与新生儿临床工作人员之间的关系（包括参与护理和沟通）、亲子关系、改善新生儿医疗护理以及解决对儿童健康和神经发育的长期影响。
有新生儿医学经验的父母有强烈、明确和反复出现的研究重点，涵盖新生儿护理实践、对家庭的心理和其他影响，以及对儿童发育的影响。这些发现应指导新生儿研究工作。除了产生新知识外，还需要将现有证据更好地传达给父母。
