Fahner Jurrianne C, Thölking Thessa W, Rietjens Judith A C, van der Heide Agnes, van Delden Johannes J M, Kars Marijke C
Julius Center for Health Sciences and Primary Care, Medical Humanities, University Medical Center Utrecht, Internal mail no Str. 6.131, P.O. Box 85500, 3508, GA, Utrecht, The Netherlands.
Department of Public Health, Erasmus Medical Center, Rotterdam, The Netherlands.
Eur J Pediatr. 2020 Sep;179(9):1461-1468. doi: 10.1007/s00431-020-03627-2. Epub 2020 Mar 19.
Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their child's future have had limited exploration. A clear understanding of their perspectives might help clinicians to implement advance care planning tailored to parental needs. This interpretive qualitative study using thematic analysis aims to identify how parents envision the future when caring for their seriously ill child. Single interviews and two focus groups were attended by 20 parents of 17 seriously ill children. Parents reported to focus on the near future of their child. However, their actions and deeper thoughts showed perspectives towards a further future. Future perspectives initial focused on practical, disease-related themes, but more existential elaborations, reflecting underlying life values, were also identified. Parents needed acknowledgement of their challenging situation, care tasks, and expertise as a precondition for sharing their deepest thoughts regarding the future of their child.Conclusion: When envisioning the future of their seriously ill child, parents tend to stay in the near future, whereas they value the opportunity to share further thoughts within a compassionate relationship with clinicians. What is Known: • Parents prefer open and honest information about their child's illness and prognosis and they value the concept of advance care planning, while they emphasize the need for an individualized approach. • Health care professionals see parental factors like unease and emotional burden as key barriers for advance care planning. What is New: • When envisioning the future of their seriously ill child, parents tended to stay close to the near future initially, with a focus on disease-related, practical themes. Ongoing conversations uncovered deeper, value-based elaborations towards the future. To engage parents in advance care planning, the future needs to be discussed in relation to the present and the past. • There is "no sharing without caring". Parents who felt cared for and acknowledged in their challenging context by clinicians, were open to share their perspectives on the future of their seriously ill child. To share deeper motives and values underlying goals and preferences for future care and treatment, parents need a stimulating attitude of listening and encouragement from clinicians to express their feelings.
预先护理计划使父母能够讨论对其重病孩子未来护理和治疗的目标及偏好。尽管临床医生报告称父母因素是预先护理计划的常见障碍，但对于父母对孩子未来的思考的看法却鲜有探讨。清楚了解他们的观点可能有助于临床医生实施符合父母需求的预先护理计划。这项采用主题分析的诠释性定性研究旨在确定父母在照顾重病孩子时如何设想未来。17名重病孩子的20位父母参加了单人访谈和两个焦点小组。父母们表示关注孩子的近期未来。然而，他们的行动和更深入的想法显示出对更长远未来的看法。对未来的看法最初集中在实际的、与疾病相关的主题上，但也发现了更多反映潜在生活价值观的存在主义阐述。父母需要临床医生认可他们面临的具有挑战性的状况、护理任务以及专业知识，这是他们分享对孩子未来最深切想法的前提条件。结论：在设想重病孩子的未来时，父母往往关注近期未来，而他们重视在与临床医生富有同情心的关系中分享更深入想法的机会。已知信息：• 父母更喜欢关于孩子病情和预后的公开、诚实的信息，他们重视预先护理计划的概念，同时强调需要个性化方法。• 医疗保健专业人员将父母的不安和情感负担等因素视为预先护理计划的关键障碍。新发现：• 在设想重病孩子的未来时，父母最初倾向于关注近期未来，重点是与疾病相关的实际主题。持续的对话揭示了对未来更深入的、基于价值观的阐述。为使父母参与预先护理计划，则需要结合当下和过去来讨论未来。• “没有关怀就没有分享”。那些在具有挑战性的情况下感受到临床医生关怀和认可的父母，愿意分享他们对重病孩子未来的看法。为了分享未来护理和治疗目标及偏好背后更深层次的动机和价值观，父母需要临床医生以鼓励倾听的积极态度来表达他们的感受。
