Exploring Family Decision-Making in Pediatric Palliative Care

描述（由申请人提供）：儿童的生命限制疾病（LLI）极大地改变了为人父母的意义。当孩子有LLI时，通过父母的视角来理解诸如决策、照顾和倡导等问题，可以让父母对什么是“好的父母”有一个综合的看法。本研究的目的是描述养育患有限制生命的疾病的孩子的经验，包括儿童姑息治疗的作用以及与孩子、医疗保健系统和其他家庭成员相关的其他问题，并描述父母对患有限制生命的疾病的孩子的“好父母”的看法，这些孩子的治疗需要重大的医疗决定。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。本研究的结果将为提高我们对低语言障碍儿童养育的理论认识奠定基础。反过来，这将作为干预措施的基础，在儿童患病期间帮助儿童及其家庭，并在儿童死亡后帮助家庭。这项研究与美国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）的科学，最近关于推进儿童生命限制疾病的儿科姑息治疗的申请（RFA-NR-10-006）证明了这一点。

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.