Fearnley Rachel, Boland Jason W
Wolfson Palliative Care Research Center, Hull York Medical School, University of Hull, Hull HU6 7RX, UK.
Healthcare (Basel). 2019 Mar 20;7(1):47. doi: 10.3390/healthcare7010047.
Being diagnosed with and having a life-limiting illness is a stressful experience which is compounded when the patient has dependent children. An important aspect of the patient's psychosocial care should include recognition that their children are also likely to experience severe stress because of the illness. However, children's needs are often overlooked during the illness. These needs include information about the illness. Health care professionals have a significant role in supporting patients to communicate with their children. This study aims to increase our understanding of children's experiences when a parent has a life-limiting illness by exploring bereaved children's experiences of the support they received when their parent had a life-limiting illness, and professionals' perspectives of the support offered to children. 7 children (aged between 9 and 24), and 16 health care professionals were interviewed about communication during parental illness. Children report needing open, clear and age appropriate conversations with parents and health care professionals to help them begin to obtain some meaning from the situation. The importance of communication is discussed, with particular reference to the role health care professionals have in supporting these conversations.
被诊断患有危及生命的疾病是一种压力巨大的经历,而当患者有未成年子女时,这种压力会更加复杂。患者心理社会护理的一个重要方面应包括认识到他们的孩子也可能因疾病而经历严重压力。然而,在患病期间,儿童的需求往往被忽视。这些需求包括有关疾病的信息。医疗保健专业人员在支持患者与子女沟通方面发挥着重要作用。本研究旨在通过探索失去亲人的儿童在其父母患有危及生命的疾病时所获得支持的经历,以及专业人员对为儿童提供支持的看法,来增进我们对父母患有危及生命的疾病时儿童经历的理解。7名儿童(年龄在9至24岁之间)和16名医疗保健专业人员接受了关于父母患病期间沟通情况的访谈。孩子们表示,需要与父母和医疗保健专业人员进行开放、清晰且适合年龄的对话,以帮助他们开始从这种情况中获得一些理解。文中讨论了沟通的重要性,特别提及了医疗保健专业人员在支持这些对话中所起的作用。