Over the last decade, there has been a concerted effort to improve care at the end of life, but the vast majority of these efforts have focused on the care of adults. However, a landmark report, issued by the Institute of Medicine, has called for national attention to pediatric palliative care. In particular, the IOM has noted that """"""""systematic data are not available"""""""" and called for research, particularly """"""""descriptive data - epidemiological, clinical, organizational and financial - to guide the provision, funding and evaluation of palliative, end-of-life, and bereavement care for children and families (IOM, 2003, p. 17)."""""""" Most children in the United States who die do so in hospitals (Feudtner, 2002; IOM, 2003), and newly emerging data indicate that over 80% of those deaths occur within pediatric intensive care units (PICUs), (Watson et al., 2003). Therefore, this multi-institutional study will take place in PICUs in 6 geographically and demographically diverse children's hospitals. 50 consecutive deaths in the PICUs of these 6 institutions (n = 300) will be followed through medical record abstraction and telephone interviews conducted with the most important stakeholders - the child's parents, the child's primary nurse, the nurse who was present at the bedside at the child's death, the attending intensivist who directed the child's care, and a clinician besides the physicians and the nurses who provided psychosocial support to the family (e.g., social worker, psychologist, child life specialist or chaplain). The goal is to describe the nature and range of current practices, assess quality of care, develop the first research tool capable of measuring quality of dying and death in the PICU, and examine associations of structure and processes of care with both quality of end-of-life care and quality of dying and death, 2 constructs that have been inadequately distinguished in prior research (George, 2002). The project will yield new knowledge of 2 distinct types: (1) a series of papers on the organizational, epidemiological, and clinical characteristics of care as well as the quality of care and the quality of dying and death, based on aggregate data from all 6 institutions; (2) methodological papers that are responsive to current calls for the development of new tools and strategies for handling vexing challenges in end-of-life care research.

Agency
National Institute of Health (NIH)
Institute
National Institute of Nursing Research (NINR)
Type
Research Project (R01)
Project #
1R01NR009298-01A1
Application #
6969216
Study Section
Health Services Organization and Delivery Study Section (HSOD)
Program Officer
Bakos, Alexis D
Project Start
2005-09-21
Project End
2009-06-30
Budget Start
2005-09-21
Budget End
2006-06-30
Support Year
1
Fiscal Year
2005
Total Cost
$563,306
Indirect Cost
Name
Education Development Center, Inc.
Department
Type
DUNS #
076583830
City
Newton
State
MA
Country
United States
Zip Code
02453
Šerý, Omar; Paclt, Ivo; Drtílková, Ivana et al. (2015) A 40-bp VNTR polymorphism in the 3'-untranslated region of DAT1/SLC6A3 is associated with ADHD but not with alcoholism. Behav Brain Funct 11:21
Sellers, Deborah E; Dawson, Ree; Cohen-Bearak, Adena et al. (2015) Measuring the quality of dying and death in the pediatric intensive care setting: the clinician PICU-QODD. J Pain Symptom Manage 49:66-78
Burns, Jeffrey P; Sellers, Deborah E; Meyer, Elaine C et al. (2014) Epidemiology of death in the PICU at five U.S. teaching hospitals*. Crit Care Med 42:2101-8
McGraw, Sarah A; Truog, Robert D; Solomon, Mildred Z et al. (2012) ""I was able to still be her mom""--parenting at end of life in the pediatric intensive care unit. Pediatr Crit Care Med 13:e350-6