Exploring Family Decision-Making in Pediatric Palliative Care

描述(由申请人提供)：儿童的生命限制性疾病(LLI)极大地改变了作为父母的意义。通过父母养育的视角理解孩子进行LLI时的决策、关怀和倡导等问题，可以对父母所认为的“好父母教育”有一个综合的看法。这项研究的目的是描述养育患有生命受限疾病的儿童的经历，包括儿科姑息护理的作用以及与儿童、医疗保健系统和其他家庭成员相关的其他问题，并描述父母对患有生命受限疾病的儿童的“好父母”的看法，这些儿童的治疗需要做出重大的医疗决定。这项定性描述性研究和必要的培训将有助于启动申请人的儿科姑息治疗研究计划。这项研究的发现将为提高我们对LLI儿童养育方式的理论理解奠定基础。这反过来又将作为干预措施的基础，在儿童患病期间和儿童死亡后帮助儿童及其家人。这项拟议的研究与国家护理研究所的研究重点高度相关，因为人们越来越认识到需要推进儿科姑息治疗(PPC)科学，最近申请为患有生命限制疾病的儿童推进儿科姑息治疗(RFA-NR-10-006)就是明证。 与公共卫生相关：与患有生命受限疾病的孩子生活在一起、照顾并最终失去孩子，对大多数家庭来说是不可想象的。表达父母的经验和观点是为适当干预奠定基础的第一步。这种干预措施不仅适用于孩子还活着的时候，而且适用于家庭在孩子去世后幸存下来的情况。这有可能减少家庭/个人解体和痛苦对公共健康的影响，这种影响在儿童死亡后波及整个社区。

DESCRIPTION (provided by applicant): Life limiting illnesses (LLI) in children dramatically changes what it means to be a parent. Understanding the issues such as decision making, care giving and advocacy when children have LLI through the lens of parenting allows for an integrated view of what parents perceive as "good parenting." The purpose of this study is to describe the experience of parenting a child with life-limiting illness, including the role of pediatric palliative care and other issues related to the child, the healthcare system, and other family members and to describe parents' perceptions of what it means to be "good parents" to children with life limiting illness whose treatment requires significant medical decisions. This qualitative descriptive study and the requisite training will serve to launch the applicant's program of research in pediatric palliative care. The findings of this study will form the basis for improving our theoretical understanding of parenting a child with LLI. This, in turn, will serve as a basis for interventions to assist children and their families during the child's illness and for families after the child has died. This proposed study is highly relevant to the research priorities of the National Institute for Nursing Research and because of the growing recognition for the need to advance the science of pediatric palliative care (PPC), as evidenced by the recent request for applications on advancing pediatric palliative care for children with life-limiting illnesses (RFA-NR-10-006). PUBLIC HEALTH RELEVANCE: Living with, caring for, and eventually losing a child with a life limiting illness is unimaginable for most families. Giving voice to the parents' experience and perspective is the first step in establishing a basis for appropriate interventions. Such interventions are applicable not only while the child is alive, but as the family survives the death of their child. This has potential to diminish the public health impact of family/individual disintegration and suffering that ripples through a community after the death of a child.