McNeilly P, Macdonald G, Kelly B
School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK.
School for Policy Studies, University of Bristol, Bristol, UK.
Child Care Health Dev. 2017 Nov;43(6):839-846. doi: 10.1111/cch.12487. Epub 2017 Aug 9.
There is widespread acceptance that parents should be fully involved in decisions about their son or daughter's health and social care. This is reflected in partnership models of practice as well as local and national policy across the United Kingdom. Previous research indicates that parents' experiences of decision making with professionals are mixed.
The research reported here aimed to explore parents' experiences of participating in decisions made with professionals about their disabled son or daughter's care.
This research used mixed methods including survey methodology and qualitative in depth interviews.
The research was conducted in one Trust in Northern Ireland. Participants were 77 parents of children and young people with a range of impairments aged between 3 and 28 years.
Three themes emerged from the data: taking the lead, not knowing, and getting the balance right. Parents wanted to be involved in all aspects of decision making. Although parents reported many examples of good practice, there were also times when they did not feel listened to or did not have enough information to inform decisions.
Parents in this research recounted positive as well as negative experiences. Parents took on a protective role when decisions were made about their son or daughter and at times, reported the need to "fight" for their child. The provision of information remains problematic for these families, and at times, this created a barrier to parents' participation in decision making. Partnership approaches to care that recognize parents' expertise are particularly important to parents when decisions are made with professionals.
人们普遍认为，父母应该充分参与有关其子女健康和社会护理的决策。这反映在实践中的伙伴关系模式以及英国各地的地方和国家政策中。先前的研究表明，父母与专业人员共同决策的经历好坏参半。
本文所报告的研究旨在探讨父母参与与专业人员共同做出的关于其残疾子女护理决策的经历。
本研究采用了混合方法，包括调查方法和定性深入访谈。
该研究在北爱尔兰的一个信托机构进行。参与者是77名年龄在3至28岁之间、子女有一系列损伤的儿童和青少年的父母。
数据中出现了三个主题：带头、不知情和把握平衡。父母希望参与决策的各个方面。尽管父母报告了许多良好做法的例子，但有时他们觉得自己的意见未被听取，或者没有足够的信息来做出决策。
本研究中的父母讲述了积极和消极的经历。在为子女做决策时，父母扮演着保护者的角色，有时还报告说需要为孩子“抗争”。对这些家庭来说，信息的提供仍然存在问题，有时这成为父母参与决策的障碍。当与专业人员共同做出决策时，认可父母专业知识的护理伙伴关系方法对父母尤为重要。
