Browse Items · Pediatric Palliative Care Library

Siblings of children with a complex chronic health condition: Maternal posttraumatic growth as a predictor of changes in child behavior problems

Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. Methods: Data were collected from a sample of 70 siblings from 58…

Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairment: Phase I (Poster)

Tags: Andrews G, Dewan T, Gnanakumar V, Holsti L, Lim E, Oberlander T, Orkin J, PIUO, poster, Richardson A, Siden H, Vadeboncoeur C

The Impact of a Diagnosis among Parents of Children with Severe, Progressive, Life-Limiting Diseases (Poster)

Final Draft Veronica Poster Jul20_18.pdf

Background: Children affected by severe, progressive life-limiting diseases experience a variety of symptoms and disease trajectories that are not well understood or described. Many of these children do not have a specific medical diagnosis, but are…

Tags: Charting the territory, Genetic Testing, Qualitative

A novel classification system for research reporting in rare and progressive genetic conditions

Aim To create a classification system for severe, rare, and progressive genetic conditions for use in research reporting. Method A modified Delphi consensus technique was used to create and reach agreement on a new system of condition categories.…

Tags: 2019, Andrews G, Beumer D, Charting the territory, Developmental Medicine & Child Neurology, Goez Helly, May 2019 List, Mostafavi S, Pawliuk C, Siden H, Steele R, van Karnebeek CDM

Impact of research participation on parents of seriously ill children

Abstract Background: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of…

Tags: 2014, Andrews GS, Backlog, Cadell S, Caregivers, Feichtinger L, Journal Article, Journal of Palliative Medicine, research participation, Siden H, Smit Quosai T, Steele R

Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions

Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis,…

Tags: 2014, Andrews GS, Archives of Disease in Childhood, Backlog, Cadell S, Charting the territory, Davies B, Feichtinger L, Genetics, Journal Article, Metabolic, Neurodisability, PEDI Study, Siden H, Singh M, Steele R

Siblings of Children With a Complex Chronic Health Condition: Maternal Posttraumatic Growth as a Predictor of Changes in Child Behavior Problems

OBJECTIVE: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings from 58…

Tags: 2016, Andrews GS, Backlog, Cadell S, DeLongis A, Journal Article, Journal of Pediatric Psychology, Siden H, Steele R, Stephenson E

Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory

BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the…

Locating a geography of nursing: space, place and the progress of geographical thought

Although traditionally, nursing research has paid little attention to geographical approaches, recent years have witnessed some initial research interest in the dynamic between nursing, space and place. Such research potentially represents the…

Tags: 2003, Andrews GJ, Backlog, Demography, Humans, Journal Article, Nursing, Nursing Philosophy, Nursing Research, Philosophy

Impact of research participation on parents of seriously ill children.

BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns…

Charting the territory: Describing the functional abilities of children with progressive neurological conditions.

AIMS: Little is known about the functional abilities of children with progressive genetic, metabolic, or neurological conditions (PNCs). In this study, children with PNCs were followed over a 2-year period to assess their functional abilities over…

Tags: 2017, Andrews GS, Charting the territory, Feichtinger L, Functional Abilities, Holsti L, Pediatric Evaluation Of Disability Inventory, Progressive Genetic Metabolic Or Neurological Conditions (pncs), Research in Developmental Disabilities, Siden H, Steele R, Tatla Sandy K

Pain Reporting And Analgesia Management In 270 Children With A Progressive Neurologic, Metabolic Or Chromosomally Based Condition With Impairment Of The Central Nervous System: Cross-sectional, Baseline Results From An Observational, Longitudinal Study

Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore…

Tags: 2017, Andrews GS, Charting the territory, Friedrichsdorf SJ, Hamre K E, Hospice, Journal Of Pain Research, Life-limiting, Neuropathic Pain, October 2017 List, Pain and Irritability Project, Palliative, Pediatric Palliative Care, Postier A, Siden H, Steele R

Siblings Of Children With A Complex Chronic Health Condition: Maternal Posttraumatic Growth As A Predictor Of Changes In Child Behavior Problems.

OBJECTIVE:
The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings…

Tags: 2016, Andrews GS, Cadell S, Charting the territory, Child Behavior Problems, Complex Chronic Conditions, DeLongis A, Families, Journal of Pediatric Psychology, June 2016 List, Pediatric Palliative Care, Posttraumatic Growth, Siblings., Siden H, Steele R, Stephenson E

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