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 2251–2275 of 4332 publications
Perinatal palliative care: a dedicated care pathway
OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents. DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment, Development and E…
Perinatal Palliative Care: Cultural, Spiritual, and Religious Considerations for Parents-What Clinicians Need to Know
For perinatal palliative care (PPC) to be truly holistic, it is imperative that clinicians are conversant in the cultural, spiritual and religious needs of parents. That cultural, spiritual and religious needs for parents should be sensitively attended to are …
Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions
Background: Perinatal Palliative Care provides comprehensive and holistic care for expectant and new parents, who receive a diagnosis of life-limiting fetal condition and opt to continue pregnancy and care for their newborn infant. Aim: To develop a service pr…
Place of death of children and young adults with a life-limiting condition in England: a retrospective cohort study
Objective To assess trends in place of death for children with a life-limiting condition and the factors associated with death at home or hospice rather than hospital.
Design Observational cohort study using linked routinely collected data.
Setting England.
Pa…
Point-of-Care Complexity Screening Algorithm to Identify Children With Medical Complexity
OBJECTIVES: For pediatric complex care programs to target enhanced care coordination services to the highest-risk patients, it is critical to accurately identify children with medical complexity (CMC); however, no gold standard definition exists. The aim of th…
Polypharmacy among pediatric cancer patients dying in the hospital
BACKGROUND: Decisions on medication treatment in children dying from cancer are often complex and may result in polypharmacy and increased medication burden. There is no information on medication burden in pediatric cancer patients at the end of life (EOL). OB…
Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data
Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by the scarc…
Postponed Withholding: Balanced Decision-Making at the Margins of Viability
Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support into an ethical dilemma. Shared decision-making with parents has g…
Potential Heart, Liver, and Kidney Donation after Circulatory Determination of Death in a Neonatal Intensive Care Unit
BACKGROUND: Pediatric organ donation after circulatory determination of death (DCD) has increased in recent years; however, there are few data reporting the number of neonatal potential DCD organ donors and no Canadian-specific reports. OBJECTIVE: The main obj…
Predictive Ability of an Illness Severity Measure: Implications for Nursing Research
BACKGROUND AND PURPOSE: Illness severity among children with life-limiting illnesses is measured with the pediatric complex chronic conditions (CCC) measure. Developed in 2000/2001, it was revised in 2014 to include infant-specific categories.
METHODS: Discrim…
Prioritization of Pediatric Palliative Care Field-Advancement Activities in the United States: Results of a National Survey
BACKGROUND: The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified eleven potential "next step" actions, and subsequently a nationa…
Programmes to prepare siblings for future roles to support their brother or sister with a neurodisability: protocol of a scoping review
INTRODUCTION: Siblings share a lifelong bond in their relationship, and they may choose to provide support to their brother or sister with a neurodisability. Previous reviews summarised programmes that only focused on the behavioural, emotional and psychologic…
Project ECHOTM pediatric palliative care: Impact of tele-mentoring and education series in nepal
Background: The vast majority (97%) of children needing palliative care live in low- and middle-income countries (LMICs). In Nepal, more than 43 000 children need palliative care, yet access to pediatric palliative care (PPC) is extremely limited. A lack of ed…
Protective and risk factors associated with psychological distress in cancer-bereaved parents: A cross-sectional study
Purpose
Research shows that knowledge about mental health status, both protective and risk factors, is limited in cancer-bereaved parents. The study aimed to investigate (1) the extent of psychological distress in bereaved parents 2–8 years after the loss of a…
Provider concordance regarding elements of goals-of-care discussions in neonatal intensive care
Clinicians may struggle to discuss goals of care with parents in the Neonatal Intensive Care Unit (NICU) and may view key elements of such conversations differently. We previously described the relationship between components of goals-of-care discussions and c…
Providing Palliative Care to Neonates With Anencephaly in the Home Setting
Parents who choose to carry a pregnancy complicated by a life-limiting congenital anomaly such as anencephaly may give birth to a live neonate and be discharged home. Very little guidance is available to health care professionals providing palliative care in t…
Psychologists in pediatric palliative care: Clinical care models within the United States
Objective: To examine the roles of psychologists in delivering pediatric palliative care (PPC) services, barriers and facilitators of psychologists’ involvement in PPC, and strategies to improve psychology integration into PPC. Method: N = 131 PPC professional…
Qualitative Analysis of Family-centered Care for Children with Cancer in Palliative Wards: An Evaluation of Needs and Barriers in Resource-limited Settings
Background: Many children with cancer are faced with fatal diagnosis and unbearable pain, and palliative care is highly needed. In Indonesia, the provision of palliative care is only accessible in a few major cities where most cancer treatment facilities are l…
Quality indicators for transition from paediatric to adult care for adolescents with chronic physical and mental illness: protocol for a systematic review
INTRODUCTION: Transition from paediatric to adult care is a complex process, which poses significant challenges for adolescents with chronic physical and mental illnesses. For many, transfer to adult care is associated with poor health and psychosocial outcome…
Quality measures for end-of-life care for children with cancer: A modified Delphi approach
BACKGROUND: The quality of adult end-of-life (EOL) cancer care has benefited from quality measures, but corresponding pediatric measures are lacking. Therefore, the authors used a validated expert panel method to recommend EOL quality measures for pediatric on…
Quality of life and burden in family caregivers of patients with advanced cancer receiving specialized palliative care
Background: The caregivers of advanced cancer patients face many physical, psychological, social, and economic problems. In this study, the quality of life and burden in the primary family caregiver of patients with advanced cancer receiving inpatient palliati…
Race, ethnicity, and goal-concordance of end-of-life palliative care in pediatric oncology
BackgroundRacial and ethnic minority children with cancer disproportionately receive intensive care at the end of life (EOL). It is not known whether these differences are goal-concordant or disparities. The authors sought to explore patterns of pediatric pall…
Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer
Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities …
Rapid paediatric program-gabapentinoids for pain
Background: The Rapid Program Paediatric series seeks to establish the broad utility and adverse effects (AE) of frequently used drugs in 'real life' paediatric palliative care (PPC). It is designed to minimise workload for individual sites through multi-site …
Recommendations for speech-language pathologists in paediatric palliative care teams (ReSP3CT): An international modified Delphi study
Purpose: There is emerging recognition within the literature that speech-language pathologists (SLPs) have a role in the provision of paediatric palliative care (PPC). SLPs, however, experience unique challenges when working with this vulnerable young cohort o…