Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 2076–2100 of 4332 publications
Experiences of general practice of children with complex and palliative care needs and their families: a qualitative study
OBJECTIVES: To investigate the views and experiences of general practice of children with life-limiting and life-threatening conditions, and their family members, through secondary analysis of a qualitative serial interview study. Thematic analysis was conduct…
Explore the Bereavement Needs of Families of Children With Cancer From the Perspective of Health Caregivers: A Qualitative Study
Introduction: The experience of bereavement is associated with severe physical, psychological, social and spiritual reactions in the parents of children with cancer. Because of that, the families of these children need to receive bereavement services. The aim …
Exploring Health Professionals' Experiences With a Virtual Learning and Mentoring Program (Project ECHO) on Pediatric Palliative Care in South Asia
Project ECHO (Extension of Community Healthcare Outcomes) is an innovative model of online education which has been proposed to enhance access to palliative care in resource-limited settings. There is limited literature describing how health care providers in …
Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study
Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help addre…
Face-Validated Quality Indicators for Appropriateness Of End-Of-Life Care in Children With Serious Illness: A Study Using the RAND/UCLA Appropriateness Method
OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurological conditions, and genetic/congenital conditions, to be applied to administrative health data containing …
Facilitators and barriers to the delivery of palliative care to children with life-limiting and life-threatening conditions: a qualitative study of the experiences and perceptions of healthcare professionals
OBJECTIVE: To understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members. DESIGN: Focus groups with children's palliative care professionals…
Facilitators Associated With Building and Sustaining Therapeutic Alliance in Advanced Pediatric Cancer
Importance: Therapeutic alliance is a core component of patient- and family-centered care, particularly in the setting of advancing cancer. Communication approaches used by pediatric oncologists to foster therapeutic alliance with children with cancer and thei…
Factors Affecting Recruitment and Participation of Bereaved Parents in Research: A Brief Report
CONTEXT: Inclusion of bereaved parents in survey-based research is essential to improving end-of-life care for children and their families. However, racial and ethnic minorities are vastly underrepresented in these studies. OBJECTIVES: Examine which child demo…
Factors affecting the grieving process after perinatal loss
Factors associated with the grief process in response to perinatal loss have been investigated. However, few studies focused on the intrapersonal factors, such as developmental and personality traits. Hence, this study aimed to investigate medical and psychoso…
Factors associated with quality of life in children receiving pediatric palliative care
CONTEXT: Since pediatric palliative care (PPC) aims to improve the health-related quality of life (HRQoL) of children with life-limiting conditions (LLC), assessment of their HRQoL and identification of its determinants is crucial. OBJECTIVES: To examine the c…
Factors contributing to men’s grief following pregnancy loss and neonatal death: further development of an emerging model in an Australian sample
Historically, men’s experiences of grief following pregnancy loss and neonatal death have been under-explored in comparison to women. However, investigating men’s perspectives is important, given potential gendered differences concerning grief styles, help-see…
Faith-sensitive end of life care for children, young people and their families
This article is part of an at a glance series on palliation and end of life care in paediatrics and focuses on the provision of faith-sensitive end of life care. Particular religions are discussed, with some key points for care of patients from some of the mos…
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 using semis…
Family Caregiver Partnerships in Palliative Care Research Design and Implementation
* Abbreviations:
IRB —
: institutional review board
PPC —
: pediatric palliative care
Patient- and family-centered care “is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnersh…
Family Experiences Deciding For and Against Pediatric Home Ventilation
Objective: To understand what considerations drive family decisions for, and against, pediatric home ventilation. Study design: Qualitative interviews with parents of children who faced a decision about home ventilation in the previous 5 years at 3 geographica…
Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey
BACKGROUND AND OBJECTIVE: Children with inherited metabolic diseases often require complex and highly specialized care. Patient and family-centered care can improve health outcomes that are important to families. This study aimed to examine experiences of fami…
Fathers Matter: Enhancing Healthcare Experiences Among Fathers of Children With Developmental Disabilities
Background: Being a parent of a child with a developmental disability (DD; e. g., cerebral palsy, autism) comes with great challenges and apprehensions. Mothers and fathers of children with DD are experiencing heightened levels of psychological distress, physi…
Feasibility, Acceptability, and Education of Pediatric Oncology Providers Before and After an Embedded Pediatric Palliative Oncology Clinic
PURPOSE: Most pediatric palliative care (PPC) education is trainee-directed, didactic, or simulation-based and therefore limited in scope, realism, and audience. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with impr…
Feasibility and Acceptability of a Reiki Intervention With Very Young Children Receiving Palliative Care
BACKGROUND: Very little research has been reported examining nonpharmacologic symptom management strategies for very young, hospitalized children receiving palliative care, and none has involved Reiki-a light touch therapy. OBJECTIVES: To determine if completi…
Fifteen-minute consultation: How to approach the withdrawal of neonatal intensive care
Withdrawal of life-sustaining support on the neonatal unit presents a set of unique challenges specific in this age group of patients. This article aims to provide an overview of the key factors that should be considered during this process. It explores the pr…
Fifteen-minute consultation: Paediatric organ and tissue donation
This article explores ways in which paediatricians can help increase awareness and embed organ and tissue donation in the end-of-life care process. This can save patient lives on the organ transplant waiting list, many of whom currently die prematurely. The in…
Focuses and trends of the studies on pediatric palliative care:A bibliometric analysis from 2004 to 2018
Objectives: To investigate the focuses and trends of the studies on pediatric palliative care (PPC) and provide directions for future research. Method(s): Relevant papers about PPC published from 2004 to 2018 were analyzed using bibliometric analysis methods, …
From Monochromatic to Technicolor: Parent Perspectives on Challenges and Approaches to Seeing Children with Severe Neurological Impairment Holistically
Background: Children with severe neurological impairment (SNI) commonly receive care in the hospital setting necessitating frequent interactions with clinicians. Yet, parents report that clinicians often have a limited understanding of their child's unique nee…
From self-compassion to compassionate action: reflecting on ending life of stillbirth care in nursing
Nurses' distress in response to the professional experience of the neonatal loss and stillbirth care is poorly addressed in nursing practice; therefore, the purpose of this study is to explore nurses' experiences of labour of a stillborn baby. A qualitative ap…
'F*** what the doctors tell you': Mistrust and disempowerment in fathers of children with life limiting conditions
Background, aim or objectives Despite a growing corpus of qualitative research exploring parental experiences of caring for a child with a life-limiting condition (LLC), studies focusing on fathers' needs are sparse. Their voice is often diluted within a predo…