Collaborative clinical research on end-of-life care in pediatric oncology.
OBJECTIVE
To present an overview of research into end-of-life (EoL) care for pediatric patients with cancer and to describe research completed by a newly formed collaboration of researchers.


METHODS
Professional group position papers and guidelines; research studies.


CONCLUSIONS
Studies to date in pediatric EoL care used retrospective, descriptive, or pilot intervention designs, have been conducted in single-institution settings, and have included small numbers of patients. Most studies have explored perspectives of parents and health care professionals but have omitted the perspective of the dying child.


CONCLUSIONS
Advancing the science of EoL care will depend on intervention-based clinical trials that include the perspective of the dying child in addi tion to parents and health care professionals.
Nebraska Medical Center, Omaha, NE 68198-7625, USA. slnuss@nebraskamed.com
Suzanne L
SL
Nuss
Pamela S
PS
Hinds
Deborah A
DA
LaFond
D000293:Adolescent; D001291:Attitude of Health Personnel; D001293:Attitude to Death; D001294:Attitude to Health; D002648:Child; D015400:Clinical Nursing Research / Q000458:organization & administration*; D003142:Communication; D003299:Cooperative Behavior; D003657:Decision Making; D005544:Forecasting; D007722:Health Knowledge, Attitudes, Practice; D006292:Health Priorities; D006801:Humans; D016294:Models, Nursing; D008960:Models, Psychological; D009369:Neoplasms / Q000451:nursing* / Q000523:psychology; D009859:Oncology Nursing / Q000458:organization & administration*; D010290:Parents / Q000523:psychology; D010371:Pediatric Nursing / Q000458:organization & administration*; D017410:Practice Guidelines as Topic; D000297:Psychology, Adolescent; D002666:Psychology, Child; D012107:Research Design; D013727:Terminal Care / Q000458:organization & administration*