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 3251–3275 of 4332 publications
Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review
Background: Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognized as a critical component of high-quality pediatric palliative care. O…
Health professionals' experiences of grief associated with the death of pediatric patients: a qualitative systematic review protocol
REVIEW QUESTION: What are health professionals' experiences of grief associated with the death of pediatric patients in acute or community healthcare settings?
How Grandparents Experience the Death of a Grandchild With a Life-Limiting Condition
Traditionally, family-focused care extends to parents and siblings of children with life-limiting conditions. Only a few studies have focused on the needs of grandparents, who play an important role in the families of children with illness and with life-limiti…
How to Increase the Quality of a Suffering Experience: Lessons Derived From the Diary Narratives of a Dying Adolescent Girl
Personal narratives are assumed to be primary sources of the essential meaning of lived experiences of dying. In this study, I analyzed the personal diary of Mirac Fidan, a terminally ill adolescent with advanced cancer who kept a diary until her death at the …
Identifying and Quantifying Adolescent and Young Adult Patient Preferences in Cancer Care: Development of a Conjoint Analysis-Based Decision-Making Tool
Compared with younger children and older adults, adolescent and young adult (AYA) patients with cancer receive more intensive end-of-life (EOL) care. We hypothesize that enhanced understanding of AYA preferences, increased engagement of these patients in decis…
Identifying Opportunities to Provide Family-centered Care for Families With Children With Type 1 Spinal Muscular Atrophy
STUDY PURPOSE: The purpose of this qualitative study was to understand, from the parent perspective, the experience of the family whose child has Type 1 spinal muscular atrophy (Type 1 SMA), in the emergency center, hospital, and clinical care settings to iden…
Identifying the Types of Support Needed by Interprofessional Teams Providing Pediatric End-of-Life Care: A Thematic Analysis
Background: Despite the number of interprofessional team members caring for children at the end of life, little evidence exists on how institutions can support their staff in providing care in these situations. Objective: We sought to evaluate which aspects of…
'If I could just chime in here': ”: Communication Patterns of Interprofessional Teams in the Pediatric Cardiac Intensive Care Unit
Purpose: To describe the communication of interdisciplinary teams in a pediatric cardiac intensive care unit (CICU) when developing care plans and preparing for family meetings because little is known about how interdisciplinary teams communicate with each oth…
Illness and end-of-life experiences of children with cancer who receive palliative care
Background: The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC). Methods: A retrospective cohort study of 321 pediatric oncolog…
"I'm Not a Spiritual Person." How Hope Might Facilitate Conversations About Spirituality Among Teens and Young Adults With Cancer
Context: Supporting patients' spiritual needs is central to palliative care. Adolescents and young adults (AYAs) may be developing their spiritual identities; it is unclear how to navigate conversations concerning their spiritual needs. Objectives: To 1) descr…
Impact of child death on paediatric trainees
OBJECTIVE: To assess the prevalence of symptoms of acute stress reactions (ASR) and post-traumatic stress disorder (PTSD) in paediatric trainees following their involvement in child death. DESIGN: A survey designed to identify trainees' previous experiences of…
Impact of Educational Training in Improving Skills, Practice, Attitude, and Knowledge of Healthcare Workers in Pediatric Palliative Care: Children's Palliative Care Project in the Indian State of Maharashtra
Background: The "Children's Palliative Care Project" was initiated in October 2010 in the Indian state of Maharashtra with a view to improve the quality of life of children with life-limiting conditions. This study evaluates its education and training componen…
Impact of Natural Disasters on Children Receiving Palliative Care Lessons Learned from Hurricane Harvey
To discuss the implications of natural disasters for pediatric palliative care patients and suggest a series of best practices for pediatric palliative care patients, their families, and their healthcare providers.
Impact of palliative care interventions on health-related quality of life (HRQOL): A secondary analysis of the Promoting Resilience in Stress Management (PRISM) Randomized Controlled Trial (RCT)
Background: PRISM, a novel intervention for adolescents and young adults (AYAs), seeks to enhance resilience skills via four inperson sessions. Primary analysis of the RCT in AYAs with cancer showed PRISM improved HRQOL. This secondary analysis aimed to explor…
Impact of parental socioeconomic factors on childhood cancer mortality: a population-based registry study
INTRODUCTION: Parental socioeconomic status has been proposed to have an influence on childhood cancer mortality even in high-income countries. Our study investigated the influence of parental socioeconomic factors on childhood cancer mortality. MATERIAL AND M…
Impact of Pediatric palliative care initiative at tertiary cancer care hospital of nepal
Background/Objectives: There are around 1400 new Pediatrics malignancies each year are estimated and around 700 are registered in Hospital based cancer registry based on B P Koirala Memorial Cancer Hospital(BPKMCH). Nearly a half of diagnosed children with can…
Impact of the Regional Pediatric Palliative Care Network on the Care of Children on Long-Term Ventilation: Could the Availability of a Residential Solution into the Network Reduce the Duration of Intensive Care Unit Staying for These Patients?
The prevalence of children on long-term ventilation (LTV) at home has increased in many countries. In Italy, there are 4.3/100,000 population younger than 18 years. Pediatric palliative care (PPC) network provides high-level care for these patients. In Decembe…
Impaired mobility associated with an increased likelihood of death in children: A systematic review
Improved identification of children with an increased likelihood of death can support appropriate provision of integrated palliative care. This systematic review aims to consider immobility and the associated likelihood of death in children with disabilities, …
Implementation of a Competency-Based, Interdisciplinary Pediatric Palliative Care Curriculum Using Content and Format Preferred by Pediatric Residents
Palliative care competencies at the pediatric resident training level expand learned knowledge into behavior. The objective of this study was to investigate mode of palliative care education delivery preferred by pediatric residents and to report on participat…
Implementing early pediatric palliative care for patients in the pediatric intensive care unit
Objectives * Create a standardized criteria for pediatric palliative care consultation using a systemic approach. * Discuss the need of a formal Palliative consult to be discussed daily in interprofessional rounds. Background. The number of palliative care con…
Improving communication within multi-disciplinary teams in children with life limiting conditions
Aims & Objectives: 60% of children admitted to RMCH PICU might benefit from palliative care (previous case review). Co-coordinating and maintaining continuity of care in these children with multi-speciality input is challenging. Weekly Multi disciplinary Team …
Improving neonatal care with the help of veteran resource parents: An overview of current practices
Over the past decade, veteran parents who have lived a neonatal intensive care unit (NICU) experience have become increasingly involved as 'resource parents' to provide peer-to-peer support to "new" NICU parents. These parents can provide a unique form of supp…
Improving the frequency of symptom assessment in pediatric palliative care patients
High quality symptom management for children receiving palliative care relies on accurate and timely documentation of symptoms. Our pediatric palliative and comfort care team (PACT) previously established a mechanism in to assess and document symptoms in the e…
Incompatible with Care: Examining Trisomy 18 Medical Discourse and Families' Counter-discourse for Recuperative Ethos
Parents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is "incompatible with life" even th…