Browse Items · Pediatric Palliative Care Library

"Doctor, I think my baby is in pain": the assessment of infants' pain by health professionals

2008

Tags: 2008, Backlog, Finley GA, Grégoire MC, Jornal De Pediatria, Journal Article

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…

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

A paediatric palliative care programme in development: trends in referral and location of death

Purpose To describe the formation of a paediatric palliative care programme providing care in hospital, at home or in hospice, ensuring continuity of care where the child and family desire. Study design Descriptive analysis was performed on referral…

Tags: 2010, Archives of Disease in Childhood, Backlog, Coulombe L, Johnston DL, Journal Article, Location Of Death, Rattray M, Splinter WM, Vadeboncoeur C

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

A qualitative approach to community and provider needs assessment in a telehealth project

OBJECTIVE: Needs assessment is a critical part of the design and implementation of telehealth projects. This study assessed the need for a telehealth link between a local community and a tertiary-care medical center. METHODS: The assessment was…

Tags: 1998, Backlog, British Columbia, Focus Groups, Humans, Journal Article, Needs Assessment, Non-U.S. Gov't, Program Development, Remote Consultation, Research Support, Siden HB, Telemedicine, Telemedicine Journal : The Official Journal Of The American Telemedicine Association

A qualitative study of advice from bereaved parents and siblings.

Despite a growing bereavement literature, relatively little is known about what families find helpful after a child's death and how best to assist them during the grieving process. In this qualitative study, the authors explored advice from 40…

Tags: 2011, Backlog, Barrera M, Davies B, Foster TL, Gerhardt CA, Gilmer MJ, Hogan N, IM, Journal Article, Journal of Social Work in End-of-Life & Palliative Care, Miller KS, sibling bereavement, Thompson AL, Vannatta K

A report of four cases of acute, severe pulmonary hemorrhage in infancy and support with extracorporeal membrane oxygenation

Introduction
Pulmonary hemorrhage is an uncommon event in infants. It has been described most commonly in the sick premature neonate, older child, or adolescent with chronic cardiopulmonary disease. Acute idiopathic pulmonary hemorrhage in…

Tags: 1994, Acute Disease, Artificial, Backlog, Extracorporeal Membrane Oxygenation, Female, Hemorrhage/complications/therapy, Humans, Infant, Journal Article, Lung Diseases/complications/therapy, Male, Moler FW, Pediatric Pulmonology, Respiration, Respiratory Insufficiency/etiology/therapy, Sanders GM, Severity Of Illness Index, Siden HB

A Report On Location of Death in Paediatric Palliative Care Between Home, Hospice and Hospital

This retrospective study analysed data for 703 children who died from 2000 to 2006 to examine where children with a broad range of progressive, life-limiting illnesses actually die when families are able to access hospital, paediatric hospice…

A theory of healing in the aftermath of youth suicide. Implications for holistic nursing practice

The purpose of this family-focused, grounded-theory study was to develop a substantive theory that explains how individual family members heal in the aftermath of youth suicide. Individual healing following youth suicide is conceptualized as a…

A typology of fatigue in children with cancer

Fatigue in adults with cancer has received considerable attention as a troublesome symptom that requires nursing intervention. Fatigue in children with cancer, however, has received considerably less focus. The first phase of the present study used…

Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting

Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family…

Tags: 2020, Child, Family Caregivers, Health Services Insights, Informal caregivers, January 2021 List, Needs Assessment, Pediatric, Self Report, Stochitoiu IA, Surveys And Questionnaires, Vadeboncoeur C

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

Addressing spirituality in pediatric hospice and palliative care

Hospice and palliative care principles mandate clinicIans to provide "total" care to patients and their families. Such care incorporates not only physical, emotional, and psychosocial care, but spiritual care as well. Even though considerable…

After a child dies: Helping the siblings.

Tags: 1993, Book/Book Section, Child, Davies B, Hospice Care For Children, Longitudinal Studies, Palliative Care, Siblings, Terminal Care

An agenda to develop Pediatric Palliative care programs to serve children with life-threatening and life-limiting conditions in the Gulf Cooperation Council countries

Medical advances have increased the number of children living with life-threatening/life-limiting illnesses worldwide, including in Gulf Cooperation Council (GCC) countries. Pediatric palliative care (PPC) is a relatively young subspecialty that…

Tags: 2023, Alotaibi Qutaibah, Child, November List 2039, Only Child, Palliative Care, Palliative Care and Social Practice, Siden Harold

An integrative approach to music therapy in pediatric palliative care.

Tags: 2014, Adolescent, British Columbia, Child, Child Preschool, Clark BA, Female, Hospices, Humans, Infant, Journal Of Palliative Care, Male, Music Therapy, Palliative Care, Program Development, Program Evaluation, Siden H, Straatman L, Young Adult

An overview of contemporary social work practice in palliative care.

Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity

Importance: Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course…

Assessment of need for a children's hospice program

Canuck Place, North America's first free-standing pediatric hospice of its kind, opened in 1995 in British Columbia, Canada. The province-wide program encompasses a broad spectrum of services intended to support community-based care and provide…

Tags: 1996, Adolescent, Backlog, Canada, Child, Child Health Services, Davies B, Death, Death studies, Grief, Health Services Needs And Demand, Hospice Care, Humans, Journal Article, PPC Book Chapter 2011 (Kim Widger), Preschool, Program Development

Away from home: Experiences of Mexican-American Families in Pediatric Palliative Care

2010

Tags: 2010, Backlog, Contro N, Davies B, Journal Article, Journal of Social Work in End-of-Life & Palliative Care, Larson JM, Sourkes B

Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic

Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died…

Barriers to palliative care for children: Perceptions of pediatric health care providers

OBJECTIVE. The goal was to explore barriers to palliative care experienced by pediatric health care providers caring for seriously ill children. METHODS. This study explored pediatric provider perceptions of end-of-life care in an academic children's…

Tags: 2008, Amidi-Nouri A, Backlog, Cooper BA, Davies B, Hughes A, Journal Article, Kramer RF, Longitudinal Studies, Partridge JC, Pediatrics, Philp JC, Sehring SA

Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease

The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program…

Bereaved Parents’ and Siblings’ Reports of Legacies Created by Children With Cancer

This qualitative study explored bereaved parents’ and siblings’ reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8-18…

Bereavement

Tags: 2004, Book/Book Section, Children, Chronic Disease, Davies B, Gudsmundsdottir M, Longitudinal Studies, Orloff S, Palliative Care, Palliative Care For Infants, Children And Adolescents: A Practical Handbook, Sumner L, Terminal Care, Terminally Ill, Toce S, Worder W

Best Practice In Provider/Parent Interaction

In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening…

Building on Values: The Future of Health Care in Canada. Chapter 7

2002

Tags: 2002, Backlog, Journal Article, PPC Book Chapter 2011 (Kim Widger), Romanow R, Widger K

Can you give me respect? Experiences of the urban poor on a dedicated AIDS nursing home unit

2008

Tags: 2008, Backlog, Davies B, Gudmundsdottir M, Hughes A, Journal Article, Journal Of The Association Of Nurses In Aids Care

Caregiver-reported nociceptive pain responses in children with significant neurological impairment (Poster)

Tags: Carleton B, Dewan T, Gnanakumar V, Holsti L, Johnston E, Oberlander T, Orkin J, PIUO, Richardson A, Siden H, Vadeboncoeur C

Case 2: A 10-year-old boy with leg pain and swelling.

Tags: 2015, Doherty M, Paediatrics & Child Health, Vadeboncoeur C, Wheaton L

Challenges in identifying children for palliative care

1996

Tags: 1996, Attitude Of Health Personnel, Attitude To Death, Backlog, Caregivers/psychology, Child, Davies B, Human, Journal Article, Journal Of Palliative Care, Palliative Care, Patient Care Team, Patient Selection, Pilot Projects, Quality Of Life, Steele R

Challenges of conducting research in palliative care

1995

Tags: 1995, Backlog, Brown P, Davies B, Journal Article, Martens N, Omega, Reimer CJ, Research

Challenges of developing a children's hospice

Tags: 1996, Bereavement, Beyond The Innocence Of Childhood: Helping Children And Adolescents Cope With Death And Bereavement, Book/Book Section, Davies B, Death, Eng B

Changes In Parents After The Death Of A Child From Cancer

CONTEXT: Few studies have compared multiple perspectives of changes experienced by parents after a child's death. OBJECTIVES: This study used interviews with bereaved parents and siblings to examine changes in parents during the first year after the…

Changes in siblings after the death of a child from cancer.

IMPLICATIONS FOR PRACTICE: Our findings offer guidance to improve aftercare for bereaved siblings and their families. Additional research is needed to further delineate the needs of bereaved siblings and to develop strategies to promote adaptation to…

Characteristics of a pediatric hospice palliative care program over 15 years.

OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children's Hospice (CPCH) is North America's first freestanding pediatric hospice. This…

Charting the Territory: Children and families living with progressive life-threatening conditions

OBJECTIVES: To increase awareness of the topic of paediatric palliative care among practicing physicians in Canada by exploring the impact of a child’s neurological or rare genetic life-threatening condition on the affected child and his/her parents.…

Tags: 2015, Backlog, Charting the territory, Journal Article, Paediatrics & Child Health, Siden H, Steele R

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

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

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