title: Strategies used by families to navigate uncharted territory when a child is dying.
abstract: The eight families in this grounded theory study moved through a process of navigating uncharted territory as they lived with a child who was dying from a neurodegenerative, life-threatening illness. The process was characterized by four dimensions: entering unfamiliar territory, shifting priorities, creating meaning, and holding the fort. Within these dimensions, parents used strategies such as seeking and sharing information; going into slow motion and focusing on the child; taking one day at a time and reframing the experience; and living by the clock and promoting the child's health, to manage the physical, cognitive, and emotional work arising from the situation. The focus of this paper is on the strategies that families used. Suggestions for practice and research are offered to assist health care professionals in providing optimal care to these families.
authors.affiliation: School of Nursing, Atkinson Faculty of Liberal and Professional Studies, York University, Toronto, Ontario, Canada.
authors.forename: Rose
authors.initials: R
authors.lastname: Steele
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D001293:Attitude to Death; D002648:Child; D002675:Child, Preschool; D005190:Family / Q000523:psychology*; D005239:Fear; D005260:Female; D006117:Grief; D006801:Humans; D008297:Male; D019636:Neurodegenerative Diseases / Q000451:nursing*; D011368:Professional-Family Relations; D013727:Terminal Care / Q000523:psychology*