Llewellyn Henry, Jones Louise, Kelly Paula, Barnes Jeanette, O'Gorman Bernadette, Craig Finella, Bluebond-Langner Myra
Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit, University College London, London, UK Louis Dundas Centre for Children's Palliative Care, UCL Institute of Child Health, University College London, London, UK.
Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit, University College London, London, UK.
BMJ Support Palliat Care. 2015 Sep;5(3):232-9. doi: 10.1136/bmjspcare-2012-000437. Epub 2013 Jun 27.
We sought to understand how healthcare professionals (HCP) conceptualise spirituality among seriously ill children and young people (CYP) and their families, and their experiences in dealing with spiritual issues that emerge in practice.
We analysed thematically presentations and small group discussions with HCP that took place as part of a day-long workshop exploring the place of spirituality in paediatric healthcare.
(1) HCP conceptualised spirituality as highly individualised searches for meaning, hope and connectedness to self, others and the world. They saw spirituality within a developmental context. (2) HCP described spiritual concerns that were tied to their own conceptualisations of spirituality, centring on ideas of loss, including loss of hope or meaning. (3) HCP approached spiritual concerns of CYP and families by 'being there' and supporting spiritual enquiry. (4) Challenges to their work included managing hopes of CYP and families in the face of poor prognoses, discussions about miracles and issues with their own faith. Spiritual care was seen as different to other areas of care which HCP felt had a greater prescription in delivery.
The findings underscore the complexity of spirituality in times of illness and the challenges faced in its management. HCP should be alerted to the myriad ways spirituality emerges in serious illness and opportunities for developing confidence in attending to spiritual issues with CYP and families through training. Research should explore with patients, families and HCP how tensions among CYP, autonomy, the maintenance of hope and miracle beliefs are best approached within care.
我们试图了解医疗保健专业人员（HCP）如何理解重症儿童和青少年（CYP）及其家庭中的灵性，以及他们在处理实践中出现的灵性问题时的经历。
我们对作为为期一天的研讨会一部分与HCP进行的主题演讲和小组讨论进行了分析，该研讨会探讨了灵性在儿科医疗保健中的地位。
（1）HCP将灵性概念化为对意义、希望以及与自我、他人和世界的联系的高度个性化探索。他们从发展的背景中看待灵性。（2）HCP描述的灵性关切与他们自己对灵性的概念化相关，以失落感为中心，包括希望或意义的丧失。（3）HCP通过“陪伴在场”和支持灵性探索来处理CYP及其家庭的灵性关切。（4）他们工作面临的挑战包括在预后不佳的情况下管理CYP及其家庭的希望、关于奇迹的讨论以及自身信仰问题。灵性护理被视为与其他护理领域不同，HCP认为其他护理领域在实施中有更多的规范。
研究结果强调了疾病时期灵性的复杂性及其管理中面临的挑战。应提醒HCP注意灵性在重症中出现的多种方式，以及通过培训增强处理CYP及其家庭灵性问题信心的机会。研究应与患者、家庭和HCP探讨如何在护理中最好地处理CYP、自主性、维持希望和奇迹信仰之间的紧张关系。
