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Definitions in paediatric palliative care
R Sutherland1, J Hearn, D Baum
1Royal Hospital for Sick Children, Bristol.
Insights
Clear definitions for pediatric palliative care terms are needed. This study proposes definitions for child, life-threatening/limiting conditions, palliative, respite, and hospice care to aid service development.
Area of Science:
- Pediatric Palliative Care
- Medical Terminology
- Healthcare Policy
Background:
- Care provision for children with life-threatening and life-limiting illnesses faces challenges due to undefined core terminology.
- Lack of agreed definitions for terms like 'child', 'life-threatening condition', 'life-limiting condition', 'palliative care', 'respite care', and 'hospice care' hinders effective service development.
- Current Department of Health pilot initiatives require standardized language for successful implementation.
Purpose of the Study:
- To propose a set of working definitions for key terms related to pediatric palliative care.
- To stimulate debate and encourage agreement on essential terminology within the field.
- To support the Department of Health's initiatives for children with life-threatening and life-limiting illnesses.
Main Methods:
- Literature review to identify existing definitions and terminology gaps.
- Expert consultation and consensus-building discussions.
- Proposal of standardized definitions for critical terms.
Main Results:
- Suggested definitions for 'child', 'life-threatening condition', 'life-limiting condition', 'palliative care', 'respite care', and 'hospice care' are presented.
- The proposed definitions aim to provide a clear and consistent framework for professionals and policymakers.
- The study facilitates a foundation for discussion and potential agreement on terminology.
Conclusions:
- Establishing agreed-upon definitions is crucial for advancing care for children with life-threatening and life-limiting illnesses.
- Standardized terminology will improve communication, service planning, and the effectiveness of support programs.
- The proposed definitions offer a starting point for achieving consensus in pediatric palliative care.
Abstract:
Consideration of care provision for children with life-threatening and life-limiting illness may be hampered by the lack of an agreed set of working definitions for such basic terms as: child, life-threatening condition, life-limiting condition, palliative care, respite care and hospice care. We suggest definitions to stimulate debate, and hopefully agreement, about terms that are central to the Department of Health's current programme of pilot initiatives in support of children with life-threatening and life-limiting illnesses, and their families.