Good Parent Intervention at End of Life

描述(由申请人提供)：患有不治之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，包括是否让他们的孩子进入第一阶段研究，使他们的孩子处于“不复苏”状态，开始临终关怀，或停止生命支持。到目前为止的描述性研究表明，帮助父母做出这些决定并在之后保持对决定满意的最大因素之一是他们认为自己决定是一个好父母会做出的决定。父母对“好父母”的定义是做出对孩子最有利的决定。父母对自己成功成为“好父母”的看法受到他们与孩子的医疗保健提供者互动的影响。没有充分了解这一决定和父母作出这一决定的理由的卫生保健提供者可能会向父母和其他卫生保健提供者传达对这一决定的怀疑。父母将这种怀疑解读为工作人员质疑父母做出正确决定的能力。缺乏足够的信息也造成了工作人员的紧张。这项单一地点的可行性研究将实施和评估一个由两部分组成的沟通干预措施，旨在确定和支持父母对好父母的看法，并将这一定义和父母决定的理由传达给工作人员。干预将在60至80种临终临床护理情况下实施，在这些情况下，父母代表仍活着的孩子做出决定。可行性研究以儿科临终生活质量模型为指导。家长干预包括面对面地采访家长，了解他们对“好父母”的定义，以及他们做出决定的依据。父母将在做出生命结束决定后72小时内接受采访，并在孩子去世后8至12周再次接受采访。分配给绝症儿童的卫生保健专业人员将在家长面谈后的几个小时内接受沟通干预，并在收到干预后1-2周评估其有效性。研究结果将为试验干预措施的有效性提供基础，以减少父母对代表垂死儿童做出临终决定的自我怀疑和工作人员的紧张情绪。

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.