title: The needs of children with life-limiting conditions: a healthcare-provider-based model.
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.
authors.affiliation: School and Educational Psychology, University at Buffalo/State University of New York, Buffalo, New York, USA.
authors.forename: James P
authors.initials: JP
authors.lastname: Donnelly
authors.forename: Susan M
authors.initials: SM
authors.lastname: Huff
authors.forename: Michael L
authors.initials: ML
authors.lastname: Lindsey
authors.forename: Kathy A
authors.initials: KA
authors.lastname: McMahon
authors.forename: J Donald
authors.initials: JD
authors.lastname: Schumacher
mesh_terms: D001291:Attitude of Health Personnel; D002648:Child; D002651:Child Advocacy; D016000:Cluster Analysis; D003657:Decision Making; D005190:Family / Q000523:psychology; D005240:Feasibility Studies; D006297:Health Services Accessibility / Q000458:organization & administration; D006301:Health Services Needs and Demand / Q000458:organization & administration*; D006801:Humans; D018447:Medical Futility; D017146:Models, Organizational; D009518:New York; D010146:Pain / Q000517:prevention & control; D010348:Patient Care Team / Q000458:organization & administration; D018802:Patient-Centered Care / Q000458:organization & administration; D010372:Pediatrics / Q000458:organization & administration*; D002666:Psychology, Child; D036301:Qualitative Research; D011785:Quality Assurance, Health Care; D011788:Quality of Life; D012297:Right to Die; D029181:Spirituality; D013727:Terminal Care / Q000458:organization & administration*