Collaborative clinical research on end-of-life care in pediatric oncology


Collaborative clinical research on end-of-life care in pediatric oncology


Nuss SL; Hinds PS; LaFond DA


Seminars In Oncology Nursing




U.S. Gov't; Attitudes; PedPal Lit; Multi-site Ethics; Extramural Research Support; N.I.H.; Non-U.S. Gov't Research Support; Nursing Models; Adolescent Adolescent Psychology Attitude of Health Personnel Attitude to Death Attitude to Health Child Child Psychology Clinical Nursing Research/; organization & administration Communication Cooperative Behavior Decision Making Forecasting Health Knowledge; P.H.S. Terminal Care/organization & administration; Practice Health Priorities Humans Models; Psychological Neoplasms/nursing/psychology Oncologic Nursing/organization & administration Parents/psychology Pediatric Nursing/organization & administration Practice Guidelines Research Design Research Support


OBJECTIVES: 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. DATA SOURCES: Professional group position papers and guidelines; research studies. CONCLUSION: 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. IMPLICATIONS FOR NURSING PRACTICE: 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.


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Nuss SL; Hinds PS; LaFond DA, “Collaborative clinical research on end-of-life care in pediatric oncology,” Pediatric Palliative Care Library, accessed December 6, 2023,