Kochen Eline M, Boelen Paul A, Teunissen Saskia C C M, Jenken Floor, de Jonge Roos R, Grootenhuis Martha A, Kars Marijke C
Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
Department of Clinical Psychology, Utrecht University, Utrecht, The Netherlands; Arq Psychotrauma Expert Group, Diemen, The Netherlands.
J Pain Symptom Manage. 2021 Jul;62(1):107-116. doi: 10.1016/j.jpainsymman.2020.11.001. Epub 2020 Nov 10.
Although parents experience grief when confronted with their child's deterioration and imminent death, most bereavement care is focused on supporting parents after child loss. Insight into intentions and strategies of the health care professionals (HCPs) in preloss care during the end of life is still lacking.
To create a starting point for improvement of preloss care, this study explores HCPs' experiences with providing support aimed at parental feelings of grief during the child's end of life.
Exploratory qualitative research using individual semistructured interviews with clinicians in pediatrics and neonatology in hospital and homecare settings. Data were thematically analyzed by a multidisciplinary team.
Nineteen HCPs participated. HCPs tried to ensure that parents could reflect on the care received as concordant to their preferences and were not hindered in their bereavement as a consequence of their professional actions. Strategies included maximizing parental presence, enabling parental involvement in decision making, and ensuring a dignified death. While using these strategies, HCPs faced several difficulties: uncertainty about the illness course, unpredictability of parental grief responses, and being affected themselves by the child's imminent death. It helped HCPs to develop a bond with parents, find comfort with colleagues, and making joint decisions with colleagues.
HCPs strive to improve parental coping after the child's death, yet apply strategies that positively influence parental preparedness and well-being during the end of life as well. Individual HCPs are left with many uncertainties. A more robust approach based on theory, evidence, and training is needed to improve preloss care in pediatrics.
尽管父母在面对孩子病情恶化和即将死亡时会经历悲痛，但大多数丧亲护理都集中在孩子去世后对父母的支持上。目前仍缺乏对临终前医护人员在丧亲前护理中的意图和策略的深入了解。
为改善丧亲前护理创建一个起点，本研究探讨医护人员在孩子临终期间提供旨在缓解父母悲痛情绪的支持方面的经验。
采用探索性定性研究，对医院和家庭护理环境中的儿科和新生儿科临床医生进行个人半结构式访谈。数据由一个多学科团队进行主题分析。
19名医护人员参与了研究。医护人员努力确保父母能够反思所接受的护理是否符合他们的偏好，并且不会因专业行为而在丧亲过程中受到阻碍。策略包括最大化父母的陪伴、让父母参与决策制定以及确保有尊严的死亡。在使用这些策略时，医护人员面临一些困难：病情发展的不确定性、父母悲痛反应的不可预测性以及他们自己也受到孩子即将死亡的影响。这有助于医护人员与父母建立联系、从同事那里获得安慰并与同事共同做出决策。
医护人员努力改善孩子去世后父母的应对能力，但也应用了一些策略，这些策略对临终期间父母的准备情况和幸福感也有积极影响。个体医护人员仍面临许多不确定性。需要一种基于理论、证据和培训的更有力方法来改善儿科的丧亲前护理。
