‘New worlds open up’: A qualitative study on Wonder Lab practices in Dutch paediatric palliative care with parents, healthcare professionals, and students

IF 1.8 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH SSM. Qualitative research in health Pub Date : 2024-08-10 DOI:10.1016/j.ssmqr.2024.100473
Liesbeth Geuze , Samuel Schrevel , Paula van Driesten – van Roozen , Anne Goossensen
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Abstract

Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each other's frames of reference and underlying values seems important. Wonder Lab practices provide a space to explore these differences by focusing together on life phenomena in curious and Socratic ways. Wonder Labs were organised with parents, healthcare professionals, and students involved in Dutch paediatric palliative care. The aim of this study was to develop an understanding of how participants experienced participating in Wonder Labs. We conducted twenty in-depth interviews with Wonder Lab participants and used inductive thematic analysis for data interpretation. Five themes were identified: Slowing down, Appreciating stories, Becoming vulnerable, Opening up and diving in, and Reframing perspectives. Participating in Wonder Labs allowed mothers, healthcare professionals, and students to contribute to deepening experiences and gain an expanded understanding of what is at play in caring for children with life-limiting and life-threatening conditions. Through working in pluralised groups, frames of reference and understandings complemented each other and could change. Participants often adopted a more open attitude towards others involved in care after participating and adapted day-to-day practices. Deliberating within paediatric palliative care on sensitive issues and their underlying personal and professional beliefs and values must be part of working together, without specific care situations being the catalyst. This may foster the mutual understanding needed in searching for quality of life, death, and bereavement.

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打开新世界":与家长、医护人员和学生一起对荷兰儿科姑息关怀中的 "奇妙实验室 "实践进行定性研究
在儿科姑息关怀中,家属和服务提供者之间建立开放、平等和相互信任的关系至关重要。然而,在实践中,建立关系可能具有挑战性。着力于更好地理解彼此的参照系和基本价值观的差异似乎很重要。奇妙实验室实践提供了一个探索这些差异的空间,以好奇和苏格拉底式的方式共同关注生活现象。参与荷兰儿科姑息治疗的家长、医护人员和学生共同组织了 "奇妙实验室"。本研究旨在了解参与者参与 "奇妙实验室 "的经历。我们对 "奇妙实验室 "的参与者进行了 20 次深入访谈,并采用归纳式主题分析法进行数据解读。我们确定了五个主题:放慢脚步、欣赏故事、变得脆弱、敞开心扉、潜入其中、重塑观点。通过参与 "奇妙实验室",母亲、医疗保健专业人员和学生能够加深体验,并进一步了解在照顾患有局限性疾病和危及生命的儿童的过程中发生了什么。通过在多元化小组中开展工作,参考框架和理解相互补充,并可能发生变化。参与者在参与之后,往往会对参与护理的其他人采取更加开放的态度,并调整日常做法。在儿科姑息关怀中讨论敏感问题及其背后的个人和专业信仰与价值观,必须成为合作的一部分,而不是以具体的关怀情况作为催化剂。这可以促进在寻求生命质量、死亡和丧亲之痛时所需的相互理解。
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CiteScore
1.60
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0.00%
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0
审稿时长
163 days
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