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 1–25 of 55 publications
Addressing Rehabilitation Needs in Pediatric Palliative Care: The Role of Occupational Therapy
AIMS: Children with life-limiting illnesses face physical, cognitive, and emotional challenges that restrict their activities of daily living. Although these needs require a holistic approach, rehabilitation services, particularly occupational therapy, are oft…
Assessing the palliative care needs of children with cancer and their families in tertiary care centres in India: A multicentre observational study
Background: Children with cancer face a significant physical and psychosocial burden, highlighting the need for paediatric palliative care (PPC). Global estimates indicate that over 21 million children require PPC. However, in low- and middle-income countries …
Palliative Care Service Needs of Children with Complex Chronic Conditions in a Hospital-to-Home Transition Unit: Insights from an Underserved Population
Introduction: Children with complex chronic conditions (CCC) represent an increasingly prevalent and vulnerable group in pediatric care, accounting for a substantial proportion of hospital admissions and health care expenditures worldwide. These children frequ…
Unidad Nacional de Oncologia Pediatrica (UNOP): A Model for Pediatric Palliative Care in Latin America
Introduction. Despite a high burden of serious illness among children living in Latin America, fewer than 8% of patients in need of pediatric palliative care (PPC) can access services [1, 2]. This study documents demand for palliative services at the Unidad Na…
Advance Care Planning for Children With Rare Diseases: A Pilot RCT
Background and objective: Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-Rare, intervention o…
Assessing Pediatric Resident Needs in Grief and Bereavement Education
Context: Pediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families.
Objectives: This work aims to as…
Bereavement Needs Assessment of a Growing Pediatric Palliative Care Program
Outcomes: 1. Participants will be able to identify the impact current bereavement resources have on patients and families treated at our free-standing children's hospital. 2. Participants will be able to identify periods during bereavement where resources coul…
Bereavement, Palliative, and End-of-Life Education Needs Assessment
INTRODUCTION: Nationally, over 45,000 children die each year with nearly 75% of those dying in hospitals and 80% of hospital deaths occurring in the Pediatric Intensive Care Unit (PICU). CHRISTUS Children's is among an estimated 20% of children's hospitals tha…
Certified Child Life Specialists in Hospice and Palliative Care Organizations: A State of the Profession
Background: Certified Child Life Specialists (CCLSs) provide developmentally appropriate psychosocial care to children to promote positive coping. However, little is known about the current professional landscape and opportunities for professional growth, espe…
"Death is Not a Dirty Word:" A Qualitative Study of Emergency Clinician End-of-Life Communication
OBJECTIVES: Pediatric patients with life-limiting diagnoses frequently seek care in the pediatric emergency department (PED) during times of acute illness, or at end-of-life (EOL) . Although the population of patients with life-limiting diagnoses is heterogeno…
Development of Specialty-Based Pediatric Palliative Care Clinics
Outcomes: 1. Utilizing a case-based approach, participants will be able to identify three different models to develop pediatric palliative care clinics. 2. Utilizing the examples and framework from this presentation, participants will be able to start and grow…
Effect of Family Centered Pediatric Advance Care Planning for Children with Rare Diseases on Meaning/Peace
Outcomes: 1. Know how advance care planning with families of children with rare diseases can improve family caregiver outcomes. 2. Understand the impact of race and social determinants of health on family caregiver appraisal of their caregiving and the impact …
Exploring Parents' Experiences and Needs During Disclosure of a Cerebral Palsy Diagnosis of Their Young Child: A Scoping Review
BACKGROUND: Parents often perceive the news that their child has cerebral palsy (CP) as overwhelming and shocking. They are at increased risk of parental stress and mental health problems, which in turn can affect the interaction between the parent and the chi…
Improving Safe Opioid Prescribing for Pediatric Hospice and Palliative Care Patients
Outcomes: 1. Utilizing a quality improvement-approach, participants will self-report the ability to assess the implementation of several opioid safety components (i.e. opioid safety contract, open-ended question, and mental health screener) and how they may im…
Spiritual Care in PICUs: A U.S. Survey of 245 Training Fellows 2020-2021*
OBJECTIVES:
To understand the perspectives of pediatric fellows training in critical care subspecialties about providing spiritual care.
DESIGN:
Cross-sectional survey of United States National Residency Matching Program pediatric fellows training in critical…
Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis
The demands of caring for a child with a life-limiting condition can have a profound impact on parents' health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents.
Aim: To assess the suita…
Exploring the Palliative Care Needs of Children in Refugee Settlements in Uganda
Background/aims: Palliative care for children should be provided wherever the child is who needs care, whether that be at home, at school, in a clinic, in a hospital, in a hospice, as well as including in humanitarian settings. It should be provided by all hea…
Pediatric Palliative Care: Insights into Assessment Tools andReview Instruments
The proper assessment of needs and outcomes in pediatric palliative care (PPC) is imperativeto ensure the best possible service to patients and families. However, given the multidimensionalnature of PPC, the low number of patients in this setting, the heteroge…
[Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale]
INTRODUCTION: The Pediatric Palliative Screening Scale (PaPaS Scale) was designed to help professionals to identify life-limiting or life-threatening children/young people with complex chronic conditions who would benefit from pediatric palliative care and fac…
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