Good Parent Intervention at End of Life

描述（由申请人提供）：患有不可治愈癌症的儿童的父母代表他们的重病儿童面临生命终结的决定，包括是否将他们的孩子纳入I期研究，使他们的孩子处于“不复苏”状态，开始临终关怀，或撤销生命支持。迄今为止的描述性研究表明，最能帮助父母做出这些决定并在事后对决定保持满意的因素之一是他们认为自己是一个“好父母”。父母将“好父母”定义为做出符合孩子最大利益的决定。父母对他们成功成为“好父母”的看法受到他们与儿童医疗保健提供者的互动的影响。不完全了解决定和父母决定理由的医疗保健提供者可能会向父母和其他医疗保健提供者传达对决定的怀疑。家长们将这种怀疑解释为工作人员质疑家长做出正确决定的能力。缺乏足够的信息也造成工作人员的紧张。这一单一地点的可行性研究将实施和评估一项由两部分组成的沟通干预措施，旨在确定和支持父母对做一个好父母的看法，并向工作人员传达这一定义和父母决定的理由。该干预措施将在60至80个临终临床护理情况下实施，其中父母代表仍然活着的儿童做出决定。该可行性研究以儿科生命终末期生活质量模型为指导。家长干预包括与家长进行面对面的访谈，了解他们对“好家长”的定义以及他们做出决定的依据。父母将在做出结束生命的决定后72小时内接受采访，并在孩子死亡后8至12周再次接受采访。分配给绝症儿童的医疗保健专业人员将在父母面谈后的几个小时内接受沟通干预，并将在接受后1至2周评估其有效性。研究结果将为一项试验提供基础，以评估干预在减少父母的自我怀疑和工作人员对代表垂死儿童做出临终决定的紧张情绪方面的有效性。

DESCRIPTION (provided by applicant): Parents of children with incurable cancer face end-of-life decisions on behalf of their seriously ill child including whether or not to enroll their child in a Phase I study, to make their child a 'do not resuscitate' status, to begin terminal care, or to withdraw life support. Descriptive research to date indicates that one of the factors that most helps parents to make these decisions and to remain satisfied with the decision afterward is their perception that they decided as a 'good parent' would decide. Parents define being a 'good parent' as making a decision that is in the best interest of their child. Parents' perception of their success of being 'a good parent' is influenced by their interactions with the child's health care providers. Health care providers who are not fully informed about the decision and the parents' rationale for the decision are likely to convey doubt about the decision to parents and to other health care providers. Parents interpret this doubt as staff questioning the parents' ability to make good decisions. Lack of adequate information also creates staff tension. This single-site feasibility study will implement and evaluate a two-part communication intervention designed to identify and support parents' perceptions of being a good parent and to communicate this definition and the rationale for the parents' decision to staff. The intervention will be implemented in 60 to 80 end-of-life clinical care situations where parents have made a decision on behalf of a child who is still living. The feasibility study is guided by the Pediatric Quality of Life at End of Life model. The parent intervention includes a face-to-face interview with parents regarding their definition of a 'good parent' and their basis for the decision they made. Parents will be interviewed within 72 hours after making the end of life decision and again 8 to 12 weeks after their child's death. Health care professionals assigned to the terminally ill child will receive the communication intervention within hours of the parent interview, and will evaluate its usefulness 1 to 2 weeks after receiving it. Study findings will provide the basis for a trial of the efficacy of the intervention in decreasing parents' self-doubt and staff tension about end-of-life decisions on behalf of dying children.