The needs of families of dying children: A case synthesis
Mesmer, Christina M
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An adequate understanding of needs is fundamental to efforts to improve the quality of life of dying children and their families. The purpose of this study was to examine the needs of families who have had a child with a life threatening illness. The study utilized an innovative method of case synthesis. Case synthesis is a new method based on principles of research synthesis. The general goals of case synthesis are to combine the results of case studies in order to test a theory, validate a model, summarize descriptive data or generate hypotheses for further study. In pediatric end-of-life care there is not yet sufficient data to conduct a traditional meta-analysis, but there has been a tradition of writing the stories of patients and their families. Until now there has been no way to accumulate the observations included in such case studies. The goals of the present study were: (1) To enumerate the needs of families identified in published case studies; (2) To evaluate the content validity of a recently developed model of family needs; (3) To identify the degree to which needs have been met in the published cases; (4) To explore the relationship of identified needs to child and family characteristics and (5) To explore the relationship of needs to functional outcomes as described in the case reports. Analyses revealed differential need identification and satisfaction across demographic variables, such as the child's age, diagnosis and family structure. Further, a five-cluster model previously proposed was examined and expanded through the addition of newly identified needs. Finally, a significant relationship was observed between the proportion of identified needs met within a family, and that family's overall functioning, as assessed by a modified UNISCALE score ( r = 0.523, p < .003).