Trajectory of Certain Death at an Unknown Time: Children with Neurodegenerative Life-Threatening llnesses

Abstract

Children with neurodegenerative life-threatening illnesses (NLTIs) account for a significant proportion of children requiring palliative care. Most of their care is provided at home by their families over many years, yet there is a paucity of research examining families' experiences when a child with an NLTI is dying at home. In this grounded theory study, data were collected from 8 families through observations and audiotaped interviews. Families moved through a process of navigating uncharted territory as they lived with their dying child. The illness trajectory of certain death at an unknown time was not a steady decline. Instead, families lived much of their lives on plateaus of relative stability where they often felt alone and isolated from health-care professionals. Inevitably, periods of instability originated in subsequent precipitating events in the process that led to families dropping off the plateau on the way to the child's inevitable death. Implications for research and practice are discussed.