Parental experiences with a paediatric palliative care team: A qualitative study
Parental experiences with a paediatric palliative care team: A qualitative study
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DOI：
10.1177/0269216317692682
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发表时间：
2017-12-01
影响因子：
4.4
通讯作者：
Kars, Marijke C.
中科院分区：
文献类型：
--
作者：
Verberne, Lisa M.;Schouten-van Meeteren, Antoinette Y. N.;Kars, Marijke C.
背景：患有限制生命的疾病的儿童的父母在家中不得不依靠自己，而缺乏足够的儿科姑息治疗。在一些国家，引入了儿科姑息护理小组，以确保护理的连续性和质量，并支持儿童和家庭。目的：从家长的角度深入了解一个新的儿科姑息护理团队所提供的支持。设计：采用主题分析的解释性定性访谈研究。背景/对象：在一所大学儿童医院的一个多学科儿科姑息护理团队的支持下，对24名儿童的42名父母进行了47次单次或重复访谈。结果：家长对儿科姑息治疗团队的期望值较低。一些人很难接受对孩子进行姑息治疗的必要性。一旦父母体验到团队为孩子和家庭所取得的成就，他们就会珍视团队的参与。有价值的因素如下：(1)与流程有关的方面，如连续性、护理协调和提供一个可靠的联络点；(2)实际支持；(3)团队成员敏感和可靠的态度。作为改进的一点，家长们建议在团队支持的内容之前做出更具体的澄清。结论：家长们感受到了儿科姑息关怀团队的支持。父母重视的这三个要素可能构成了儿童姑息治疗质量的基础结构。新的团队应该涵盖这三个有价值的元素。
Background: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and quality of care and to support the child and the family. Yet, little is known about how parents experience such multidisciplinary teams.Aim: To obtain insight into the support provided by a new paediatric palliative care team from the parents' perspective.Design: An interpretative qualitative interview study using thematic analysis was performed.Setting/participants: A total of 47 single or repeated interviews were undertaken with 42 parents of 24 children supported by a multidisciplinary paediatric palliative care team located at a university children's hospital. The children suffered from malignant or non-malignant diseases.Results: In advance, parents had limited expectations of the paediatric palliative care team. Some had difficulty accepting the need for palliative care for their child. Once parents experienced what the team achieved for their child and family, they valued the team's involvement. Valuable elements were as follows: (1) process-related aspects such as continuity, coordination of care, and providing one reliable point of contact; (2) practical support; and (3) the team members' sensitive and reliable attitude. As a point of improvement, parents suggested more concrete clarification upfront of the content of the team's support.Conclusion: Parents feel supported by the paediatric palliative care team. The three elements valued by parents probably form the structure that underlies quality of paediatric palliative care. New teams should cover these three valuable elements.