Getting a Seat at the Table: An Iterative Development Process to Improve Available Benchmark Data for Pediatric Palliative Care Programs (S778)
administrative personnel; child; conference abstract; controlled study; District of Columbia; hospital patient; human; palliative therapy; perception; phase 1 clinical trial; program development; workflow
Objectives: * Describe a longitudinal, iterative, and cross-organizational design process. * Describe pediatric palliative care program structure and process measurement. * Create additional opportunities to expand the benchmark data available for Pediatric Hospice and Palliative Care program development. Original Research Background: Pediatric palliative care (PPC) has evolved dramatically over the last ten years. In many ways PPC services have become the standard of practice, effectively changing the paradigm of program development. Unfortunately, barriers remain for programs' ability to meet the clinical demand, including limited benchmark information to inform program development. While some data is available, PPC programs perceive the data as not specific or not applicable to PPC needs. This perception has facilitated low participation and a paucity of data. Research Objectives: In 2017, three PPC program directors undertook an iterative process to address this data challenge.
Klick J; Humphrey L; Friebert S; Rogers M; Williams C
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.339" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.339</a>
Quality of life for children with life-limiting and life-threatening illnesses: description and evaluation of a regional, collaborative model for pediatric palliative care
adolescent; Child; Female; Humans; infant; Male; Palliative Care; Terminal Care; referral and consultation; Pediatrics; Health Personnel; Program Evaluation; Continuity of Patient Care; Biomedical Research; Inservice Training; District of Columbia; quality of life; Preschool; Newborn; PEDI Study; Quality of Health Care
The care of children in the U.S. with life-limiting illnesses is inadequate. Misallocated resources, flawed assumptions and models of care, and a lack of appropriate professional education foster a costly, inefficient system that falls short of its true potential. This article details the evolution of a regional, shared approach to address these issues, the District of Columbia Pediatric Palliative Care Collaboration (DCPPCC), and includes its evolution, preliminary clinical results, and assessment of barriers encountered.
Rogers SK; Gomez CF; Carpenter P; Farley J; Holson D; Markowitz M; Rood B; Smith K; Nigra Peter
The American Journal Of Hospice & Palliative Care
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049909110380594" target="_blank" rel="noreferrer">10.1177/1049909110380594</a>