Browse Items · Pediatric Palliative Care Library

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

Facilitating day-to-day decision making in palliative care

As part of a larger grounded theory study investigating the process by which palliative care patients make everyday choices, a secondary analysis of data was conducted to investigate the ways nurses support or restrict patients' participation in…

Factors contributing to post-traumatic growth: a proposed structural equation model

With the current shift to include positive outcomes of trauma, this research was designed to explore factors that allow growth to occur. Structural equation modeling was used to test a model for understanding posttraumatic growth. A sample (N = 174)…

Fading away: The experience of transition for families with terminal illness

Tags: 1995, Book/Book Section, Brown P, Davies B, Family, Martens N, Reimer JC

Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study

This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…

Tags: 2008, Cadell S, Canada, Child, Davies B, Derman S, Health Planning, Health Services Needs And Demand, Hospices/organization & administration, Humans, International Journal of Palliative Nursing, Palliative Care, Pediatrics, Pilot Projects, Siden H, Steele R, Straatman L

Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study

This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…

Families' transition to a Canadian paediatric hospice. Part two: results of a pilot study

The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada.…

Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study

BACKGROUND: Cannabis is legal for recreational and medical use in Canada. Our aim was to explore family experiences using medical cannabis for children with severe conditions in the context of legalization. METHODS: We conducted a qualitative study…

Tags: 2021, Cmaj Open, Epilepsy, Family Attitudes, Gibbard M, July 2021 List, medical cannabis, Medicinal Cannabis, Mount D, Oncology, Pain Management, Parent Experiences, Pediatric Palliative Care, Rassekh SR, Siden H

Family functioning: Impact on siblings.

Tags: 1999, Attitude to death -- In infancy & childhood, Bereavement -- in infancy & childhood, Bereavement In Children, Book/Book Section, Brothers and sisters -- Death -- Psychological aspects, Children and death, Davies B, Grief in children, Longitudinal Studies, Shadows In The Sun: The Experiences Of Sibling Bereavement In Childhood., Sibling Relations -- in infancy & childhood

From death notification through the funeral: bereaved parents' experiences and their advice to professionals

Parents who experience the sudden death of a child will interact with many professionals in the period immediately following the death notification through to the funeral. The way these professionals respond to the parents during this critical period…

Tags: 2003, Attitude To Death, Backlog, Bereavement, Cadell S, Child, Death, Fatal Outcome, Funeral Rites, Grief, Janzen L, Journal Article, Omega, Parents, Sudden, Westhues A

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

Grief and bereavement in pediatric palliative care

Tags: 2010, Book/Book Section, Davies B, Jin J, Limbo R, Oxford Textbook Of Palliative Nursing

Grief and growth in bereaved siblings: Interactions between different sources of social support

The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings’ grief and grief-related growth and to examine whether nonparental sources of social support…

Growing up: Perspectives of children, families, and service providers regarding the needs of older children with perinatally-acquired HIV

2006

Tags: 2006, AIDS care, Alimenti A, Backlog, Cadell S, Chapman GE, Fielden SJ, Forbes JC, Frankish JC, Journal Article, Scheckter L, Sheps S

Haloperidol as a palliative anti-emetic in a toddler: an evidence base challenge

2008

Tags: 2008, Antiemetics, Backlog, Evidence-based Medicine, Fatal Outcome, Haloperidol, Humans, Infant, Journal Article, Journal of Pain and Symptom Management, Male, Nausea, Palliative Care, Precursor Cell Lymphoblastic Leukemia-Lymphoma, Siden H

High dose opioids in pediatric palliative care.

HIV/AIDS

Tags: 2005, Acquired Immunodeficiency Syndrome, Book/Book Section, Cadell S, Hiv, The Canadian Encyclopedia Of Social Work

Identifying Indicators Of Quality Pediatric Palliative Care: A Systematic Review

Pediatric palliative care (PPC) is a relatively new but rapidly expanding specialty area with a variety of models of care provision. Identification and validation of quality indicators specific to PPC is essential to accurately monitor and assess the…

Tags: 2016, Duc J, February 2017 List, Feudtner C, Johnston K, Journal of Pain and Symptom Management, Rapoport A, Siden H, Widger K, Wolfe J

Impact of End-of-Life Circumstances on the Adjustment of Bereaved Siblings of Children Who Died from Cancer

The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their…

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 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

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…

Impact of specialized pediatric palliative care programs on communication and decision-making

OBJECTIVE: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. METHODS: Our search strategy covered MEDLINE, PsycINFO,…

Tags: 2019, April 2019 List, Children, Communication, Counseling, Decision-making, Medeiros C, Palliative Care, Patient Education & Counseling, Pediatrics, Specialized pediatric palliative care program, Streuli JC, Trenholm M, Widger K, Zuniga-Villanueva G

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

Impact on parents when a child has a progressive, life-threatening illness.

Children with neurodegenerative, life-threatening illnesses (NLTIs) account for a significant proportion of children requiring palliative care, yet there is a lack of of research that examines families' experiences. This grounded theory study…

Tags: 2006, Backlog, Child, Davies B, Disease Progression, Humans, International Journal of Palliative Nursing, Journal Article, Longitudinal Studies, Palliative Care, Parent-child Relations, Pediatrics, Steele R

Improving Quality of life in Hospitalized Children

There are many ways to add to children's quality of life within the hospital environment. Inpatient settings offer both opportunities and challenges with respect to providing care to children with life-threatening illnesses. The barriers to pediatric…

Tags: 2014, Backlog, Children, Distress, Hospital, Journal Article, Pediatric Clinics of North America, Quality Of Life, Rapoport A, Weingarten K

Improving the regulation of medical cannabis in Canada to better serve pediatric patients

Key points Children with chronic debilitating illness and pain are increasingly using cannabis for medical purposes, particularly when conventional treatment options have limited benefit or substantial adverse effects. Caregivers are becoming aware…

Indicators Used to Assess the Impact of Specialized Pediatric Palliative Care: A Scoping Review

BACKGROUND: Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they…

Tags: 2018, February 2019 List, Journal of Palliative Medicine, Medeiros C, Palliative Care, Pediatrics, Quality Indicators, review literature, Streuli J C, Trenholm M, Widger K, Zuniga-Villanueva G

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

Informing social work practice through research with parent caregivers of a child with a life-limiting illness

Pediatric palliative care is an evolving field of practice in social work. As such, research plays a critical role in informing best social work practices in this area. For parents, caring for a child with a life-limiting illness (LLI) is a stressful…

Initial development and psychometric testing of an instrument to measure the quality of children's end-of-life care

BACKGROUND: The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care. METHODS: The study purpose was to develop and test an instrument to measure…

Tags: 2015, Backlog, BMC Palliative Care, Journal Article, Steele R, Streiner DL, Tourangeau AE, Widger K

Innovations in Research with Medically Fragile Populations: Using Bulletin Board Focus Groups

A new group of medically fragile young adults are graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and no comparable adult services to support their complex needs. Accessing this population…

Tags: 2014, Browne G, Bulletin Board Focus Group, Case Studies, Complexity, Cook K, Disability/Disabled Persons, End-Of-Life Issues, Focus Groups, Illness and Disease, Jack S, Siden H, Thabane L, The Qualitative Report, Young Adults

Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study

Background Children with life-threatening conditions frequently experience high intensity care at the end of life, though most of this research only focused on children with cancer. Some research suggests inequities in care provided based on age,…

Tags: 2023, Bmc Pediatrics, Brennenstuhl S, Child, Gupta S, Nelson KE, Only Child, Rapoport A, Seow H, September List 2059, Siden H, Tanuseputro P, Terminal Care, Vadeboncoeur C, Widger K

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

Introducing a lexicon of terms for paediatric palliative care.

Tags: 2015, Davies D, Macdonald ME, Paediatrics & Child Health, Siden H, Spicer S, Vadeboncoeur C

Introducing a Lexicon of Terms for Pediatric Palliative Care

2015

Tags: 2015, Backlog, Davies D, Journal Article, Macdonald ME, Paediatrics & Child Health, PEDI Study, Siden H, Spicer S, Vadeboncoeur C

Investing In Uncertainty: Young Adults With Life-limiting Conditions Achieving Their Developmental Goals.

BACKGROUND:
With improvements in pediatric care and technology, more young adults (YAs) with life-limiting conditions (LLCs) are surviving into adulthood. However, they have limited expectations to live beyond the first decade of adulthood. This…

Tags: 2016, Adolescent, Browne G, Cook KA, Disabilities, Health Care Sciences & Services, Health-care, Jack SM, Journal of Palliative Medicine, May 2016 List, Palliative Care, Perspectives, Policy, Siden H, Thabane L, Transition, Youth

Lexicon of Terms in Pediatric Palliative Care

PedPalASCNET-Lexicon-31-July2014-Final.pdf

This Lexicon has been developed through a collaborative process by the PedPalASCNET network members as a tool for clinicians and researchers to standardize the usage of common terms in the field of pediatric palliative care. The Lexicon reflects the…

Tags: 2014, Davies D, Macdonald ME, Siden H, Spicer S, Vadeboncoeur C

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…

Living in the dragon's shadow': Fathers' experiences of a child's life-limiting illness

Grounded theory methods were used to study the experiences of 8 bereaved fathers whose children received care in a home-based hospice program. In-depth, unstructured interviews were audiotaped, transcribed, and coded for themes and categories. Every…

Tags: 2004, Backlog, Brenner Paul, child's terminal illness, Davies B, Death, Death and Dying, Death studies, father experience, Fathers, Gudmundsdottir M, Hospice, Journal Article, Orloff S, SSHRC CURA, Sumner L, Worden B

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