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American Journal of Hospice and Palliative Medicine®, Vol. 22, No. 4, 259-267 (2005)
DOI: 10.1177/104990910502200406
© 2005 SAGE Publications

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

James P. Donnelly, PhD

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

Susan M. Huff, MSN

Center for Hospice and Palliative Care, Cheektowaga, New York

Michael L. Lindsey, PhD

New York State Department of Health, Albany, New York

Kathy A. McMahon, BS

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

J. Donald Schumacher, PsyD

National Hospice and Palliative Care Organization, Alexandria, Virginia

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.

Key Words: pediatrics • palliative care • needs • concept mapping


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