Bennett Helen Elizabeth, Duke Sue, Richardson Alison
Alexander Devine Children's Hospice Service, Maidenhead, UK
School of Health Sciences, University of Southampton Faculty of Medicine Health and Life Sciences, Southampton, UK.
BMJ Support Palliat Care. 2024 Dec 19;14(e3):e2726-e2736. doi: 10.1136/spcare-2023-004348.
Parents have unique experience of caring for their child with a life-limiting illness and significant insight into the experience of advance care planning. However, little is known about how they experience and manage this process. Our objective was to understand parents' experience of advance care planning for their child.
Data collected through semistructured interviews and documents using a constructivist and situational grounded theory approach. Parents with experience of end-of-life decisions or advance care planning for a child (age 0-17 years) with a life-limiting condition or life-threatening condition.
13 parents participated; 11 interviews were undertaken with analysis of 9 advance care plans. Parents were interviewed separately (n=9) or together (n=2).Overarching and inter-related categories, realisation, reconciling multiple tensions and building confidence and asserting control explained the actions and processes of parents' experience of advance care planning. The arising theory, reconstructing meaning through advance care planning, describes how the process of advance care planning, enables parents to make 'good' decisions in complex medical situations and despite the emotional distress, has therapeutic value.
This study confirms parents want to engage in advance care planning, use the process to continuously reorientate their values alongside treatment decisions and that offers a therapeutic value not previously recognised. This requires healthcare professionals to reframe their approach to advance care planning conversations valuing parents' voices and desire for a sense of control and empowering them to make future decisions that offer hope and build resilience to face the future death of their child.
父母在照顾身患危及生命疾病的孩子方面有着独特经历，对预先护理计划的体验有着深刻见解。然而，对于他们如何经历和处理这一过程却知之甚少。我们的目标是了解父母对其孩子预先护理计划的体验。
采用建构主义和情境扎根理论方法，通过半结构化访谈和文件收集数据。研究对象为有过为患有危及生命或有生命危险疾病（0 - 17岁）的孩子做出临终决定或预先护理计划经历的父母。
13位父母参与研究；进行了11次访谈，并分析了9份预先护理计划。父母分别接受访谈（n = 9）或共同接受访谈（n = 2）。总体且相互关联的类别，即认知、调和多种矛盾以及建立信心和主张控制权，解释了父母预先护理计划体验的行动和过程。由此产生的理论，即通过预先护理计划重构意义，描述了预先护理计划的过程如何使父母在复杂的医疗情况下做出“正确”决定，并且尽管存在情感困扰，该过程仍具有治疗价值。
本研究证实父母希望参与预先护理计划，利用这一过程在做出治疗决定的同时不断重新定位自己的价值观，并且该过程具有此前未被认识到的治疗价值。这要求医疗保健专业人员重新调整他们进行预先护理计划谈话的方式，重视父母的声音以及他们对掌控感的渴望，并使他们有能力做出能带来希望并增强面对孩子未来死亡的复原力的未来决定。
