The needs of children with life-limiting conditions: A healthcare-provider-based model

Author:

Donnelly James P.1,Huff Susan M.2,Lindsey Michael L.3,McMahon Kathy A.4,Schumacher J. Donald5

Affiliation:

1. School and Educational Psychology, University at Buffalo/State University of New York, Buffalo, New York

2. Center for Hospice and Palliative Care, Cheektowaga, New York

3. New York State Department of Health, Albany, New York

4. Hospice and Palliative Care Association of New York State, Albany, New York

5. National Hospice and Palliative Care Organization, Alexandria, Virginia

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 endof-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.

Publisher

SAGE Publications

Subject

General Medicine

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