Validation of a model of pediatric end-of-life needs
Rafter, Erin McDonough
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The purpose of this study was to validate a model of end-of-life needs of children previously generated in a study of pediatric palliative care professionals (Donnelly et al., 2005) by examining the parental point of view. The study methodology replicated the prior study, utilizing the Concept Mapping (CM) methods originally developed by Trochim in 1989. The study was completed in two stages. The first stage involved phone interviews with 22 parents of children who were currently enrolled in, graduated from, or died while receiving care from the Essential Care for Children Program, a home-based pediatric palliative care program. During the phone interviews, parents generated 201 needs statements which were reviewed and reduced to 100 unique needs statements after review by the researchers. During the second stage, 18 parents sorted and rated the importance of the 100 needs statements. The data was examined in a sequence of multivariate procedures including multidimensional scaling and cluster analysis. Results indicated some agreement between the professionals and the parents regarding the overall needs of children receiving end-of-life care. An eight cluster concept map was developed, with Quality of Life needs rated as the highest in importance. The other seven clusters included (according to importance rating by parents in descending order): Family-Team Interactions, Family Integrity, Pediatric Palliative Quality Assurance, Follow-Up Needs, Active Treatment & Inpatient Needs, Initial Adjustment, and Child Integrity. Pattern matching across groups revealed that the top three clusters for all the groups were Quality of Life, Family-Team Interaction, and Family Integrity. This result indicates that regardless of the family status in treatment, according to the parents, these needs are important across domains. Many parents shared comments indicating that there are still strides to make regarding identifying and providing care to the children and families involved with pediatric palliative care.