The Department of Pediatric Oncology and the Center for Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts;
Oregon Health and Science University, Portland, Oregon; and.
Pediatrics. 2015 May;135(5):868-74. doi: 10.1542/peds.2014-2855. Epub 2015 Apr 6.
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.
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.
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.
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.
先前的研究表明，尽管收到了预后信息，癌症患儿的父母仍可能保持希望，但我们对这些父母的希望意味着什么，以及父母在面对孩子即将死亡时仍能感到希望的程度知之甚少。
我们录制了 32 名患有复发或难治性癌症的儿童的临床医生与父母之间的对话，然后对父母进行了有关他们对孩子的希望和期望的访谈。
访谈中父母对预后的陈述反映了临床医生在讨论孩子难治性或复发性癌症诊断时的陈述。临床医生在这些对话中使用了与希望相关的语言，但并未直接询问父母的希望。父母对孩子表达了一系列的希望，从与治愈或治疗反应相关的希望，到生活质量、正常状态，以及孩子的爱和关系。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，同时也表示他们不相信治愈是可能的。许多父母能够承认这种不一致。
父母在患有晚期癌症的情况下准确地传达了孩子严重病情的现实，但仍保持着希望。希望并不仅限于对治愈/治疗反应的希望。应鼓励临床医生与父母进行直接的关于希望的对话，以引出切合实际的希望，这有助于为孩子和家庭制定最有意义的计划。
