Lindley Lisa C, Colman Mari Beth, Meadows John T
Assistant Professor, University of Tennessee, College of Nursing, 1200 Volunteer Blvd., Knoxville, TN 37996, (865) 974-0653.
Associate Professor, University of Tennessee, College of Education, Health, and Human Services, 416 Bailey Education Complex, Knoxville, TN 37996-3442, (865) 974-4456.
J Hosp Palliat Nurs. 2017 Feb;19(1):28-33. doi: 10.1097/NJH.0000000000000301.
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.
在美国，每年有超过42000名儿童死亡，其中包括智障儿童。当智障儿童同时患有严重的运动功能障碍、进行性先天性疾病和合并症时，其生存率往往会降低。然而，对于智障儿童的临终关怀知之甚少。本研究的目的是探讨智力残疾与临终关怀利用之间的关系。此外，我们还探讨了智力残疾合并运动功能障碍、进行性先天性疾病和合并症是否会影响儿科临终关怀的利用情况。我们采用回顾性队列设计，并利用2009年至2010年加利福尼亚医疗补助索赔文件中的数据，对临终关怀利用情况进行了多变量分析。本研究表明，智力残疾与临终关怀登记和住院时间呈负相关。我们还发现，当儿童同时患有智力残疾和合并症时，与登记接受临终关怀护理呈正相关。临终关怀和姑息治疗护士可以从研究结果中得出一些临床启示，以改善他们在生命末期照顾智障儿童及其家庭的临床实践。
