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).
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.