Browse Items · Pediatric Palliative Care Library

Experiences of families in which a child has a prolonged terminal illness: modifying factors.

A significant proportion of children requiring palliative care have neurodegenerative life-threatening illnesses (NLTIs). While most of their care is provided at home by their families over many years, there is a paucity of research examining…

Tags: 2002, Backlog, Child, Communication, Family, Female, Humans, International Journal of Palliative Nursing, Journal Article, Longitudinal Studies, Male, Neurodegenerative Diseases/nursing, Non-U.S. Gov't, Parents/psychology, Research Support, Steele R, Terminal Care/psychology

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

Introducing a lexicon of terms for paediatric palliative care.

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

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

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

The emerging issue of euthanasia

2005

Tags: 2005, Adolescent, Archives Of Pediatrics & Adolescent Medicine, Backlog, Child, Decision Making, Euthanasia, Humans, Infant, Journal Article, Longitudinal Studies, Netherlands, Newborn, Pediatrics/statistics & numerical data, Preschool, Siden HB, Terminal Care

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

Telehealth: connecting with families to promote health and healing

Telehealth is defined as the provision of health care via telecommunications wherever individuals are geographically separated. In this literature review, we explore the role of telehealth in family care. Telehealth has not been fully examined for…

Tags: 2001, Backlog, Family, home care services, Journal Article, Journal Of Family Nursing, Siden H, Starr E, Telemedicine, Tredwell S, Young L

P259 A Scoping Review to Examine Symptoms in Children with Rare, Progressive, Life-Threatening Disorders

2016-12

Tags: 2016, Backlog, Beck C, Brown H, Dewan T, Grégoire MC, Harvey B, Hermansen AM, Journal Article, Journal of Pain and Symptom Management, Pawliuk C, Q3 Scoping Review, Siden H, Steele R, Widger K

Using network analysis to map the formal clinical reporting process in pediatric palliative care: a pilot study

ABSTRACT: BACKGROUND: Continuity of care is a key component of care in complex and chronic conditions. Despite its importance, it is often absent in chronic-disease management. One challenge has been identifying tools to measure care continuity. In…

Tags: 2011, Backlog, BMC Health Services Research, Journal Article, NET CV, Siden H, Urbanoski K

Using Network Analysis To Map The Formal Clinical Reporting Process In Pediatric Palliative Care: A Pilot Study

BACKGROUND: Continuity of care is a key component of care in complex and chronic conditions. Despite its importance, it is often absent in chronic-disease management. One challenge has been identifying tools to measure care continuity. In one context…

Tags: 2011, BMC Health Services Research, British Columbia, Community-institutional Relations, Continuity Of Patient Care, Hospice Care, Humans, Models Theoretical, Palliative Care, Pediatrics, Pilot Projects, Risk Management/ Organization & Administration, Siden H, Urbanoski K, Using Network Analysis To Map The Formal Clinical Reporting Process In Pediatric Palliative Care: A Pilot Study

Pediatric Enteral Feeding Intolerance: A New Prognosticator For Children With Life-limiting Illness?

Tags: 2009, Child, Child Preschool, Cox K, Derman S, Enteral Nutrition/ Adverse Effects, Female, Hartnett C, Humans, Infant, Journal Of Palliative Care, Male, Pediatric Enteral Feeding Intolerance: A New Prognosticator For Children With Life-limiting Illness?, Prognosis, Siden H, Soon GS, Straatman L, Terminal Care/ Methods, Tucker T

The Madison Clinic: Evaluation Of A Collaborative Outpatient Paediatric Palliative Care Clinic

BACKGROUND: A multidisciplinary outpatient clinic at a tertiary care children's hospital supported and staffed by a children's hospice was created to enhance and expand the inpatient palliative care services available to families of children with…

Tags: 2009, Ambulatory Care Facilities, Continuity Of Patient Care, Ham J, Miller T, Paediatrics, Paediatrics & Child Health, Palliative Care, Siden H, Straatman L, The Madison Clinic: Evaluation Of A Collaborative Outpatient Paediatric Palliative Care Clinic

Crocker, et al.: Reducing barriers to parent participation in pediatric palliative care research.

Tags: 2016, Biomedical Research, Cadell S, Charting the territory, Female, Humans, Male, Palliative Care, Palliative Medicine, Parents/psychology, Patient Selection, Research Design/standards, Siden H, Steele R

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…

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

Nutritional failure and cachexia in a pediatric palliative care population.

2006

Tags: 2006, Backlog, Cox K, Journal Article, Journal Of Investigative Medicine, Longitudinal Studies, NET CV, Siden H, Soon G, Straatman L

Pain management for children with a developmental disability in a primary care setting

Tags: 2008, Book/Book Section, Oberlander T, Pain In Children: A Practical Guide For Primary Care, RDF Project, Siden H

High dose opioids in pediatric palliative care.

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…

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

PIUO+Study+Poster+-+Child-Bright+VS2022.pdf

Tags: Hermansen AM, Pain, PIUO, Siden H

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…

Shifting Focus In Pediatric Advance Care Planning: From Advance Directives To Family Engagement

The foundational principle of palliative care is to provide comfort, ameliorate symptoms, and offer emotional support when death is inevitable. Advance care planning (ACP) elicits patients' goals for the future. One important result of an ACP…

Tags: 2016, Chavoshi N, Journal of Pain and Symptom Management, July 2016 List, Siden H

Physician Variability In Treating Pain And Irritability Of Unknown Origin In Children With Severe Neurological Impairment

BACKGROUND: Pain and irritability of unknown origin (PIUO) is a challenging problem for nonverbal children with severe neurological impairments. PIUO is not associated with an identifiable source of nociceptive-inflammatory or neuropathic pain.…

Tags: 2013, Adolescent, Analgesics/ Therapeutic Use, Carleton BC, Child, Developmental Disabilities/ Complications, Female, Humans, Male, Oberlander TF, Pain and Irritability Project, Pain Management/ Methods, Pain Research & Management, Pain/complications/ Drug Therapy, Physician Variability In Treating Pain And Irritability Of Unknown Origin In Children With Severe Neurological Impairment, Pilot Projects, Practice Patterns Physicians'/ Statistics & Numerical Data, Siden H

Physician variability in treating pain and irritability of unknown origin in children with severe neurological impairment

BACKGROUND: Pain and irritability of unknown origin (PIUO) is a challenging problem for nonverbal children with severe neurological impairments. PIUO is not associated with an identifiable source of nociceptive-inflammatory or neuropathic pain.…

Tags: 2013, Article #6, Backlog, Carleton BC, Journal Article, Oberlander T, Pain Research & Management : The Journal Of The Canadian Pain Society = Journal De La Societe Canadienne Pour Le Traitement De La Douleur, Siden H

Physician stress in the context of medical aid in dying

2016-09

Tags: 2016, Backlog, Journal Article, Siden H, University of British Columbia Medical Journal

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

The boy who refused an IV: a case report of subcutaneous clodronate for bone pain in a child with Ewing Sarcoma

ABSTRACT: BACKGROUND: Bone pain in malignancy can be challenging to treat. Bisphosphonates have been found to be useful in adults with bone pain, but there are no reports of their use in children for this indication. In pediatric palliative medicine…

Tags: 2007, Backlog, Journal Article, Journal Of Medical Case Reports, Longitudinal Studies, Siden H

Differences On Psychosocial Outcomes Between Male And Female Caregivers Of Children With Life-limiting Illnesses

This secondary analysis of data examined the psychosocial outcomes of meaning in caregiving, self-esteem, optimism, burden, depression, spirituality, and posttraumatic growth in 273 parents caring for children with life-limiting illnesses to (a)…

The integration of religious traditions in Japanese children's view of death and afterlife

2007

Tags: 2007, Backlog, Davies B, Death studies, Journal Article, Sagara-Rosemeyer M

Siblings' Voices: A Prospective Investigation Of Experiences With A Dying Child

Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal qualitative study over two years using interpretive descriptive…

Tags: 2017, Barrera M, Beaune L, Cadell S, Children, Death studies, end-of-life, July 2017 List, Neville A, Palliative Care, Pediatrics, Rapoport A, Rugg M, Russell CE, Sibling, Steele R, Widger K

The relationship between grief adjustment and continuing bonds for parents who have lost a child

This article presents findings from a study on the impact of a child's death on parents. We explored the prominence and adaptiveness of parents' continuing bonds expressions, psychological adjustment, and grief reactions. A qualitative case study…

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

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

Using Web Analytics and Social Media to Improve Knowledge Translation and Increase Patient Engagement

For the last several months our team of clinicians and health librarians have been collecting analytics data via Google Analytics, Twitter analytics, and MailChimp analytics to inform the following projects as part of an outreach strategy: The…

Tags: Health librarian, Hermansen AM, knowledge translation, Pawliuk C, poster, Research Methods, Robins S, Siden H, social media, web analytics

Nutritional differences in neurologically impaired children

OBJECTIVES: To determine whether the recommended nutritional intake of moderately to severely neurologically impaired children is congruent with current growth parameter expectations. METHODS: Observational cross-sectional study at a children's…

Tags: 2012, Backlog, Journal Article, Paediatrics & Child Health, Riley A, Vadeboncoeur C

Perceptions of control and long-term recovery from rape

The relationship between perceptions of control and symptoms of both long-term depression and post-traumatic stress was examined. Enduring beliefs of personal competence and control were found to be associated with lower rates of depression and…

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

Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care

BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under speci fi c circumstances. However, most of the evidence on FANH…

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…

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