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The needs of children with life-limiting conditions: a healthcare-provider-based model
James P Donnelly1, Susan M Huff, Michael L Lindsey
1School and Educational Psychology, University at Buffalo/State University of New York, Buffalo, New York, USA.
Insights
This study developed a model of needs for children with life-limiting conditions, encompassing pain, decision-making, medical care, dignity, family support, spirituality, and psychosocial well-being.
Area of Science:
- Palliative Care
- Pediatric Health
- Child Psychology
Background:
- Pediatric hospice and palliative care models have advanced.
- Empirical literature lacks a comprehensive model for children's end-of-life needs.
Purpose of the Study:
- To develop an empirically based conceptual model of needs for children with life-limiting conditions.
- To provide a framework for improving pediatric end-of-life care.
Main Methods:
- Concept mapping methodology was employed.
- Integrated qualitative and quantitative data to capture a holistic view of needs.
- A seven-cluster model was developed for interpretability and parsimony.
Main Results:
- The developed model identifies seven key clusters of needs:
- 1. Pain management
- 2. Decision-making involvement
- 3. Medical system access and quality
- 4. Dignity and respect
- 5. Family-centered care
- 6. Spiritual support
- 7. Psychosocial issues
Conclusions:
- The conceptual model offers a comprehensive framework for understanding pediatric end-of-life needs.
- This model can guide the development of measurable and effective support strategies for children and their families.
- It represents a significant step toward enhancing care quality in pediatric palliative care.
Abstract:
Pediatric hospice and palliative care has progressed in recent years with the development of new programs and models of care. Missing from the empirical literature, however is a model of the needs of children. The purpose of the present study was to develop an empirically based conceptual model of the needs of children with life-limiting conditions. Recognizing the value of both qualitative and quantitative data, concept mapping methodology was selected as an effective way to obtain data that reflected both the "big picture" and subtleties of pediatric end-of-life needs. The seven-cluster concept map appeared best in terms of both interpretability and parsimony. This model includes the following clusters of needs: 1) pain, 2) decision making, 3) medical system access and quality, 4) dignity and respect, 5) family-oriented care, 6) spirituality, and 7) psychosocial issues. We believe that the development of a comprehensive model of the needs of such children is a step toward concrete, measurable, and effective support for children and their families.
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