Browse Items · Pediatric Palliative Care Library

No Child Is An Island: Ethical Considerations In End-of-life Care For Children And Their Families

PURPOSE OF REVIEW:
Ethical challenges are commonly encountered when caring for children with life-threatening conditions.
RECENT FINDINGS:
Controversial end-of-life issues, such as physician-assisted death and medical futility, may also arise in…

Tags: 2016, Current Opinion in Supportive and Palliative Care, June 2016 List, Morrison W, Rapoport A

Paediatric palliative care: There is always more we can do

Tags: 2015, Liben S, Paediatrics & Child Health, Rapoport A

Addressing ethical concerns regarding pediatric palliative care research

2009

Tags: 2009, Archives Of Pediatrics & Adolescent Medicine, Backlog, Decision Making, Ethics, Humans, Journal Article, Palliative Care/ethics, Pediatrics/ethics, Rapoport A, Research, United States

Sublingual atropine drops for the treatment of pediatric sialorrhea

Excess oral secretions or sialorrhea is a common problem affecting children and adults with neurological disorders, as well as those approaching the end of life because of a variety of underlying illnesses. Systemic anticholinergic medications are…

Tags: 2010, Backlog, Journal Article, Journal of Pain and Symptom Management, Rapoport A

A place to die: The case for paediatric inpatient hospices

2008

Tags: 2008, Backlog, Journal Article, Paediatrics & Child Health, PPC Book Chapter 2011 (Kim Widger), Rapoport A

Promoting An Ethic Of Engagement In Pediatric Palliative Care Research

BACKGROUND: This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have…

Tags: 2015, Bartlett G, BMC Palliative Care, Crimi L, Ells C, Humans, Jabado N, July 2017 List, Longo C, Macdonald ME, Palliative Care/methods, Patient Participation/methods, Pediatric Nursing/methods, Quality Of Life, Rahimzadeh V, Research

Timing is everything: The experience of parental cancer for young adult daughters-a pilot study

2008

Tags: 2008, Backlog, Cadell S, Journal Article, Journal Of Psychological Oncology, Puterman J

End of life in pediatric oncology: how clinical practice leads to research

In pediatric oncology nursing, and across practice disciplines in general, clinical research serves as the cornerstone for improving patient care. Historically, advances made in the care and cure of childhood cancer have stemmed directly from…

Tags: 2002, Biomedical Research, Child, Davies B, Evidence-based Medicine, Humans, Journal Of Pediatric Oncology Nursing, Oncology 2017 List, Oncology Nursing/td [trends], Pediatrics/td [trends], Pritchard M, Research Design

Contributions and recognition of patient partners in pediatric health research: a rapid scoping review protocol

Objective: The objective of this rapid scoping review is to: 1) assess the prevalence of acknowledgement and authorship of patient partners in pediatric health research; 2) understand how patient partners contribute through the research process; and…

Tags: acknowledgement, Authorship, Barrans C, Hermansen AM, patient and public involvement, patient partner, Patient Partner Recognition, patient-oriented research, Pawliuk C, Preprint, protocol, rapid review, Scoping review, Siden H

Librarian involvement in systematic reviews was associated with higher quality of reported search methods: a cross-sectional survey of authors from Vancouver, BC

Objectives
Systematic reviews (SRs) are considered the gold standard of evidence, but many published SRs are of poor quality. This study identifies how librarian involvement in SRs is associated with quality-reported methods and examines the lack of…

Efficacy and safety of paediatric medicinal cannabis use: A scoping review

INTRODUCTION: The use of medicinal cannabis in the paediatric age group is increasing despite the lack of evidence for its efficacy or safety. OBJECTIVE: To map the available evidence on the efficacy and safety of medicinal cannabis in children and…

Tags: 2021, Cannabidiol, Cannabis, Chau B, Drug-resistant epilepsy, McKellar T, Medicinal Cannabis, Medicinal marijuana, Paediatrics And Child Health, Pawliuk C, Rassekh SR, Scoping review, Siden H, Tetrahydrocannabinoid

Optimising the process for conducting scoping reviews

Knowledge synthesis constitutes a key part of evidence-based medicine and a scoping review is a type of knowledge synthesis that maps the breadth of literature on a topic. Conducting a scoping review is resource intensive and, as a result, it can be…

Tags: 2021, BMJ Evidence-Based Medicine, Brown HL, Dewan T, Evidence-based Medicine, Grégoire MC, Hermansen AM, Humans, information science, Pawliuk C, Publications, Q3 Scoping Review, Research Design, Siden H, Steele R, Widger K

A Comparative Cost-minimization Analysis Of Providing Paediatric Palliative Respite Care Before And After The Opening Of Services At A Paediatric Hospice

A palliative care service provider may add or decrease overall operational costs to the healthcare system. This study assessed the costs of managing respite care for children with life-limiting illness at the Children's Hospital of Eastern Ontario…

Sibling bereavement and continuing bonds.

Historically, from a Freudian and medical model perspective, emotional disengagement from the deceased was seen as essential to the successful adaptation of bereavement. A major shift in the bereavement literature has occurred and it is now generally…

Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies

Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This…

Tags: 2018, Children, Faerber J, Feinstein J, Feudtner C, Gerhardt C, May 2018 List, Nelson K, Rosenberg A, Widger K

Mourning and meaning

Viewed in an expanded frame, the phenomena of grief and bereavement call for analysis in sociological, psychological, and psychiatric terms. In this article, the authors argue that a common theme in these accounts is that of the meaning of loss as…

Tags: 2002, American Behavioral Scientist, Backlog, Bereavement, Davies B, Grief, Journal Article, mourning, Neimeyer RA, Prigerson HG

The experiences of physicians, nurses, and social workers providing end-of-life care in a pediatric acute-care hospital

This qualitative study explored the experiences of social workers, nurses, and physicians providing end-of-life care to children in a pediatric acute-care hospital setting. Findings demonstrated that participants experienced both professional and…

Tags: 2019, Anthony S, Beaune L, Brownstone D, Death studies, Greenblatt A, Hubley P, May 2019 List, Muskat B, Newman C, Rapoport A

Death and Grief On-Line: Virtual Memorialization and Changing Concepts of Childhood Death and Parental Bereavement on the Internet

‘Virtual memorials’ intended to memorialize the lives of children imply significant shifts in the conceptualization of death, particularly for grieving parents. Created by parents in memory of their deceased children, on-line memorials constructed…

Tags: 2012, Cadell S, Health Sociology Review, Macdonald ME, Mitchell LM, Stephenson PH

Patterns of grief in young children following the death of a sibling

Abstract Specific grief behaviors observed in children ages 4-16 years in the 2 years after the death of a sibling are reported. Using the Child Behavior Checklist (CBCL), the parents of 90 boys and girls rated the occurrence of behavior problems in…

Tags: 1995, Backlog, Davies B, Death, Death studies, Grief, Journal Article, McCown DE, sibling bereavement

The empty space phenomenon: The process of grief in the bereaved family

1987

Tags: 1987, Backlog, Davies B, Death studies, Journal Article, Kulenkamp E, Martinson I, May A, McClowry S, SSHRC CURA

Conducting feminist research in nursing: personal and political challenges

The challenges of doing feminist nursing research include both personal and political elements. Some of these arise from the threefold influences of being nurses, women, and academics within a larger social context that may be antithetical to…

Tags: 1998, Attitude Of Health Personnel, Backlog, Choice Behavior, Female, Feminism, Health Care For Women International, Humans, Journal Article, Maxwell-Young L, Nurses/psychology, Nursing Methodology Research/methods/standards, Olshansky E, Politics, Research Personnel/psychology, Steele R, Women/psychology

Parental depression following the death of a child

1991

Tags: 1991, Backlog, Child, Davies B, Death, Death studies, Depression, Journal Article, Martinson I, McClowry S

Using Colors to Assess Pain in Toddlers: Validation of "The Rainbow Pain Scale"-A Proof-of-Principle Study

Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale…

Tags: 2014, Backlog, Giaschi D, Holsti L, Journal Article, Journal Of Pediatric Oncology Nursing, Mahon P, Siden H, Strahlendorf C, Turnham L

Using colors to assess pain in toddlers: validation of "the rainbow pain scale"-a proof-of-principle study.

Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale…

Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death

OBJECTIVES: Acts of kindness and commemoration by staff members often follow the death of a patient. Acts include attending funerals, sending sympathy cards, sending cards on birthdays/anniversaries, telephoning/visiting family homes, and attending…

Excluding parental grief: A critical discourse analysis of bereavement accommodation in Canadian labour standards

BACKGROUND: Grief following child loss is profoundly destabilizing with serious long-term repercussions for bereaved parents. Employed parents may need time away from work to deal with this loss.OBJECTIVE: The purpose of this study was to reflect…

Tags: 2014, Backlog, Cadell S, Journal Article, Kennedy K, Macdonald ME, Mitchell LM, Moll S, Pineda C, Stephenson PH, Work (reading, Mass.)

Gender imbalance in pediatric palliative care research samples

We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative…

Tags: 2010, Affleck W, Backlog, Cadell S, Chilibeck G, Journal Article, Macdonald ME, NET CV, Palliative Medicine

interRAI Pediatric Home Care (PEDS-HC) Assessment Tool: Evaluating Ontario Healthcare Workers’ Experience

High quality pediatric homecare requires comprehensive assessment of the needs, supports, and health care challenges of children with special healthcare needs and their families. There is no standardized homecare assessment system to evaluate…

Tags: 2022, Doherty M, Focus Groups, Health Services Insights, home care services, Lynch-Godrei A, May 2022 List, Needs Assessment, Pediatrics, Vadeboncoeur C

Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty

Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty.…

Infant Maternal Perinatal Advanced Care Team: A Pilot Collaboration for Families Facing a Life-Threatening Fetal Diagnosis

Background: The Infant Maternal Perinatal Advanced Care Team program was launched in 2018 to enhance perinatal palliative care services in Toronto, Canada. Methods: Pilot patients were (1) carrying a fetus with a life-limiting diagnosis and (2)…

Tags: 2022, Advance Care Planning, February List 2023, Goodman K, Ives-Baine L, Journal of Palliative Medicine, Life-threatening Conditions, Lord S, Mackenzie J, Perinatal Care, Pollard L, Rapoport A, Salminen R, Van MS, Williams R

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

Paediatric palliative care: Challenges and emerging ideas.

2007

Tags: 2007, Backlog, Journal Article, Liben S, Papadatou D, The Lancet, Wolfe J

Paediatric palliative care: Challenges and emerging ideas.

Paediatric palliative care is an emerging subspecialty that focuses on achieving the best possible quality of life for children with life-threatening conditions and their families. To achieve this goal, the individuals working in this field need to:…

Tags: 2007, Backlog, Journal Article, Lancet, Liben S, Longitudinal Studies, Papadatou D, Wolfe J

Pediatric palliative care

Tags: 2007, Book/Book Section, Liben S, Palliative Care: Core Skills And Clinical Competencies

Pediatric Project ECHO®: A Virtual Community of Practice to Improve Palliative Care Knowledge and Self-Efficacy among Interprofessional Health Care Providers

Background: Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO® (Extension for Community Healthcare Outcomes) is a model for delivering…

Tags: 2020, continuing professional development, distance education, February 2021 List, Journal of Palliative Medicine, Lalloo C, Osei-Twum J, Pediatric Palliative Care, Project ECHO, Rapoport A, Stinson J, Vadeboncoeur C, Veldhuijzen van Zanten S, Weingarten K, Widger K

Exploring what motivates parents of children living with medical complexity to participate in research studies: An Interpretive Phenomenology study (Poster)

Motivations Study Poster- CHILD-BRIGHT VS2022.pdf

Tags: 2022, Cook K, Hermansen AM, Kim L, Motivations Study, Parent Participation, Siden H

Pain Detectives: Optimizing the Management of Pain and Irritability of Unknown Origin in Children with Severe Neurological Impairment (Poster)

Tags: Carleton B, Dewan T, Gnanakumar V, Ketchum K, Oberlander T, Orkin J, PIUO, Richardson A, Siden H, Vadeboncoeur C

Impact of Palliative Care Involvement on End-of-Life Care Patterns Among Adolescents and Young Adults With Cancer: A Population-Based Cohort Study

PURPOSEEvidence suggests that adolescents and young adults (AYAs) with cancer (defined as age 15-39 years) receive high-intensity (HI) medical care at the end-of-life (EOL). Previous population-level studies are limited and lack information on the…

Tags: 2021, 2021 Special Edition - Oncology, Earle C, Gupta A, Gupta S, Journal Of Clinical Oncology, Kassam A, Luo J, Oncology, Rapoport A, Srikanthan A, Sutradhar R, Widger K, Wolfe J

Impact of Specialized Versus General Palliative Care on the Intensity of Medical Care at the End of Life in Adolescents and Young Adults with Cancer: A Population-Based Cohort Study

Outcomes: 1. Explain the impact of specialized palliative care on reducing high-intensity end-of-life care in adolescents and young adults with cancer 2. Identify subpopulations among adolescents and young adults with cancer who are at highest risk…

Tags: 2022, 2022 Special Edition 3 - Oncology List, Earle C, Gupta A, Gupta S, Journal of Pain and Symptom Management, Kassam A, Luo J, Rapoport A, Srikanthan A, Sutradhar R, Widger K, Wolfe J

Psychological Correlates of Depression in Children with Recurrent Abdominal Pain

Objective To examine the associations between coping style, social support, self-efficacy, locus of control, maternal adjustment, and depressive symptoms in children with recurrent abdominal pain (RAP) of childhood. Methods Fifty children with RAP…

Tags: 2006, Backlog, Dewey D, Journal Article, Journal of Pediatric Psychology, Kaminsky L, PedPal Lit, Robertson M

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