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 2226–2250 of 4332 publications
Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study
BACKGROUND: Pediatric palliative care (PPC) patients experience years of multisectoral and professional care. An electronic cross-facility health record (ECHR) system can support the immediate exchange of information among PPC professionals. Based on a needs a…
Participatory Design of an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Study with Nurses and Physicians
BACKGROUND: Electronic medical records (EMRs) offer a promising approach to mapping and documenting the complex information gathered in paediatric palliative care (PPC). However, if they are not well developed, poorly implemented EMRs have unintended consequen…
Participatory development of a modular advance care planning program in pediatric palliative care (MAPPS)
CONTEXT: Decision-making in pediatric palliative care concerns mainly children without decision-making capacity. It has to balance the child's best interests, parental responsibility and the impact on the family system. OBJECTIVES: Advance care planning (ACP) …
Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults with Cancer
Importance: End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed. Objective(s): To identify priority domains for end-of-life care from the perspectives of AYAs, family careg…
Patient-reported outcome measures in pediatric palliative care-a protocol for a scoping review
BACKGROUND: In pediatric palliative care (PPC), there is a need to involve the child's voice in situations regarding their symptoms and care needs. Patient-reported outcome measures (PROMs) can be tools to systematically gather data reported from the child or …
Patients with chronic conditions and their complex care needs in a tertiary care hospital
Introduction: Health care for children with complex chronic conditions (CCC) constitutes an evolving and a challenging part of practices in pediatrics. These children need end-of-life services such as palliative care. The aim of this study was to identify the …
Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT
BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effe…
Pediatric care coordination and risk tiering: Moving beyond claims data
PURPOSE: The goal of this study was to evaluate the performance of a pediatric stratification tool that incorporates health and non-medical determinants to identify children and youth with special health care needs (CYSHCN) patients according to increasing lev…
Pediatric Chronic Critical Illness, Prolonged ICU Admissions, and Clinician Distress
To gain an in-depth understanding of the experience of pediatric intensive care unit (PICU) clinicians caring for children with chronic critical illness (CCI), we conducted, audiotaped, and transcribed in-person interviews with PICU clinicians. We used purposi…
Pediatric Death by Neurologic Criteria: The Ever-Changing Landscape and the Expanding Role of Palliative Care Professionals
Pediatric palliative care providers are especially suited to support families and medical teams facing a potential diagnosis of brain death, or death by neurologic criteria (DNC), when a child suffers a devastating brain injury. To support pediatric palliative…
Pediatric End-of-Life Care in Rural America: A Systematic Review
BACKGROUND: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. OBJECTI…
Pediatric palliative care and surgery
Care for pediatric patients with serious or potentially life-limiting illness involves the interplay of multiple medical and surgical teams within the hospital. Pediatric surgeons are capable of performing procedures that can improve the quality of life for ch…
Pediatric palliative care at home by Home Care Unit: how home nurses feel?
PURPOSE: Our Home Care Unit (HCU) undertakes close to twenty pediatric palliative care engagements per year. We investigated the factors underlying such care by independent home health nurses. METHODS: This was a retrospective, observational, single-center stu…
Pediatric palliative care: Competency and educational needs assessment in pediatricians of a developing country
Pediatric Palliative Care (PPC) is a nascent subspecialty that aims on achieving the best possible quality of life for children with life-threatening illnesses. To attain this goal in a developing country, Pediatricians require adequate knowledge and skill in …
Pediatric Palliative Care Education Model in Low Resource Settings: A Mixed-Methods Evaluation
CONTEXT: Globally, approximately 21.6 million children need pediatric palliative care (PPC). The greatest burden lies in low- and middle-income countries, where the demand for PPC exceeds available resources. OBJECTIVES: The objective of this study was to asse…
Pediatric Palliative Care for Children with Cancer in a Children's Tertiary Hospital in China: Six-Year Experience of a Pediatric Palliative Care Service
Background: Pediatric palliative care (PPC) does not meet current needs, particularly in low- and middle-income countries. Objective: We evaluated the first PPC team to serve patients with cancer in a tertiary children's hospital in China. Design: Single-cente…
Pediatric Palliative Care for Children With Severe Neurological Impairment and Their Families
Up to 40% of patients cared for by pediatric palliative care teams have severe neurologic impairment (SNI). Children with SNI have congenital/chromosomal, central nervous system static or progressive conditions that result in lifelong cognitive disabilities an…
Pediatric palliative care from nursing and PharmD perspectives
Background: This research aimed to survey a sample of nursing students and Doctor of Pharmacy (PharmD) students in Jordan about their knowledge of pediatric palliative care (PPC) in the context of treating terminally ill children. Method(s): A descriptive, cro…
Pediatric palliative care parents' distress, financial difficulty, and child symptoms
CONTEXT: Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and…
Pediatric Palliative Care Pharmacy Pearls-A Focus on Pain and Sedation
Determining the optimal dosing regimen for pediatric patients is a challenge due to the lack of dosing guidelines and studies. In addition, many developmental pharmacology changes that occur throughout childhood that have profound impacts on the absorption, di…
Pediatric Palliative Care Programs in US Hospitals
BACKGROUND AND OBJECTIVES: Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the current opera…
Pediatrics Palliative Care from Nursing and PharmD Perspectives
BACKGROUND: This research aimed to survey a sample of nursing students and PharmD students in Jordan about their knowledge of pediatric palliative care (PPC) in the context of treating terminally ill children. METHOD(S): A descriptive, cross-sectional, correla…
Perceptions of nurses caring for children with life-limiting conditions in an acute setting in the Republic of Ireland
BACKGROUND: Despite international developments in paediatric palliative care (PPC), nurses continue to report feeling unprepared, anxious and overwhelmed when caring for patients with palliative care needs. There is an identified need throughout the literature…
Perceptions of the parents of deceased children and of healthcare providers about end-of-life communication and breaking bad news at a tertiary care public hospital in India: A qualitative exploratory study
BACKGROUND: Parents of dying children face unique challenge and expect compassionate support from health care providers (HCPs). This study explored the experiences of the parents and HCPs about the end-of-life care and breaking bad news and related positive an…