title: Children with intellectual disability and hospice utilization.
abstract: Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital conditions, and comorbidities. Yet, little is known about hospice care for children with intellectual disability. The purpose of this study was to explore the relationship between intellectual disability and hospice utilization. Additionally, we explored whether intellectual disability combined with motor dysfunction, progressive congenital conditions, and comorbidities influenced pediatric hospice utilization. Using a retrospective cohort design and data from the 2009 to 2010 California Medicaid claims files, we conducted a multivariate analysis of hospice utilization. This study shows that intellectual disability was negatively related to hospice enrollment and length of stay. We also found that when children had both intellectual disability and comorbidities, there was a positive association with enrolling in hospice care. A number of clinical implications can be drawn from the study findings that hospice and palliative care nurses use to improve their clinical practice of caring for children with ID and their families at end of life.
authors.affiliation: Assistant Professor, University of Tennessee, College of Nursing, 1200 Volunteer Blvd., Knoxville, TN 37996, (865) 974-0653.
authors.forename: Lisa C
authors.initials: LC
authors.lastname: Lindley
authors.affiliation: Associate Professor, University of Tennessee, College of Education, Health, and Human Services, 416 Bailey Education Complex, Knoxville, TN 37996-3442, (865) 974-4456.
authors.forename: Mari Beth
authors.initials: MB
authors.lastname: Colman
authors.affiliation: Assistant Professor, University of Tennessee Medical Center, Graduate School of Medicine, 1924 Alcoa Highway, Box U-94, Knoxville, TN 37920, 865-305-9290.
authors.forename: John T
authors.initials: JT
authors.lastname: Meadows
keywords: Medicaid; hospice care; hospice enrollment; hospice length of stay; intellectual disability; pediatric hospice utilization