title: Key factors affecting dying children and their families.
abstract: The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care.
authors.affiliation: Division of Nursing Research and the St. Jude Palliative and End-of-Life Care Task Force, St. Jude Children's Research Hospital, and Department of Clinical Psychology, University of Memphis, Tennessee 38105, USA. pam.hinds@stjude.org
authors.forename: Pamela S
authors.initials: PS
authors.lastname: Hinds
authors.forename: Lisa
authors.initials: L
authors.lastname: Schum
authors.forename: Justin N
authors.initials: JN
authors.lastname: Baker
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
mesh_terms: D000293:Adolescent; D001601:Bereavement; D002648:Child; D003142:Communication; D003657:Decision Making; D005190:Family / Q000523:psychology*; D006801:Humans; D010166:Palliative Care / Q000592:standards*; D011368:Professional-Family Relations; D011787:Quality of Health Care; D013315:Stress, Psychological / Q000209:etiology; D013727:Terminal Care / Q000592:standards*