Parental Hope for Children With Advanced Cancer
Parental Hope for Children With Advanced Cancer
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DOI：
10.1542/peds.2014-2855
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发表时间：
2015-05-01
期刊：
影响因子：
8
通讯作者：
Mack, Jennifer W.
中科院分区：
文献类型：
--
作者：
Kamihara, Junne;Nyborn, Justin A.;Mack, Jennifer W.
背景：以前的研究表明，尽管收到了预后信息，癌症儿童的父母仍然可以保持希望，但我们对希望对这类父母意味着什么，或者即使面对孩子迫在眉睫的死亡，父母仍然能感到有多大的希望知之甚少。方法：我们录制了32名复发或难治性癌症儿童的临床医生和父母之间的对话，然后就他们对孩子的希望和期望采访了父母。结果：父母在访谈中关于预后的陈述反映了临床医生在讨论儿童被诊断为难治性或复发性癌症时所做的陈述。临床医生在这些对话中使用了提到希望的语言，但没有直接询问父母他们的希望。父母表达了对孩子的一系列希望，从与治愈或治疗反应有关的希望，到对孩子的生活质量、正常生活以及对孩子的爱和关系。对于大多数父母来说，对预后的期望与他们对孩子的希望不一致；例如，许多父母希望治愈，但也报告说，他们不相信治愈是可能的。许多父母能够认识到这种不一致。结论：父母准确地传达了孩子在晚期癌症背景下病情严重的现实，但仍保持着希望。希望并不局限于治愈/治疗反应的希望。应该鼓励临床医生与父母就希望进行直接对话，以此作为引发现实希望的一种手段，这有助于集中精力制定对儿童和家庭最有意义的计划。
BACKGROUND: Previous work suggests that parents of children with cancer can remain hopeful despite receiving prognostic information, but we know little about what hope means to such parents, or the extent to which parents can feel hopeful even while facing the child's impending death.METHODS: We audiotaped conversations between clinicians and parents of 32 children with relapsed or refractory cancer, and then interviewed parents about their hopes and expectations for their child.RESULTS: Parent statements about prognosis in interviews mirrored those made by clinicians during discussions about the child's diagnosis with refractory or relapsed cancer. Clinicians used language referring to hope during these conversations but did not ask parents directly about their hopes. Parents expressed a range of hopes for their children, from hopes related to cure or treatment response, to quality of life, normalcy, and love and relationships for the child. For most parents, expectations about prognosis were not aligned with their hopes for the child; for example, many parents hoped for a cure and also reported that they did not believe cure was possible. Many parents were able to acknowledge this incongruence.CONCLUSIONS: Parents accurately conveyed the reality of their child's serious condition in the setting of advanced cancer, and yet maintained hope. Hopes were not limited to hope for cure/treatment response. Clinicians should be encouraged to engage in direct conversations about hope with parents as a means to elicit realistic hopes that can help to focus the most meaningful plans for the child and family.