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Collaborative clinical research on end-of-life care in pediatric oncology
Suzanne L Nuss1, Pamela S Hinds, Deborah A LaFond
1Nebraska Medical Center, Omaha, NE 68198-7625, USA. slnuss@nebraskamed.com
Insights
Research on pediatric cancer end-of-life (EoL) care is limited. Future studies must include the dying child's perspective for improved EoL care.
Area of Science:
- Pediatric Oncology
- Palliative Care
- Clinical Research
Background:
- End-of-life (EoL) care for pediatric cancer patients requires further research.
- Existing studies often lack comprehensive perspectives.
Purpose of the Study:
- To review current research in pediatric cancer EoL care.
- To outline research from a new collaborative group.
Main Methods:
- Literature review of professional guidelines and research studies.
- Analysis of existing research designs and participant demographics.
Main Results:
- Pediatric EoL care research is predominantly retrospective, descriptive, or pilot-based.
- Studies are often single-institution with small patient cohorts.
- Most research captures parent and healthcare professional views, excluding the child's perspective.
Conclusions:
- Future research must incorporate intervention-based clinical trials.
- Including the dying child's perspective is crucial for advancing EoL care science.
- Collaboration is key to improving pediatric palliative care outcomes.
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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