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 1076–1100 of 4332 publications
Pediatric Perspectives on Palliative Care in the Neurocritical Care Unit
Pediatric neurocritical care teams care for patients and families facing the potential for significant neurologic impairment and high mortality. Such admissions are often marked by significant prognostic uncertainty, high levels of parental emotional overload,…
Pediatric Population Management Classification for Children with Medical Complexity
Improving the overall care of children with medical complexity (CMC) is often beset by challenges in proactively identifying the population most in need of clinical management and quality improvement. The objective of the current study was to create a system t…
Pediatric Resuscitation, Parental Presence, and Provider Perspective
Background: Varying opinions and practices exist about parental presence during a pediatric resuscitation. In addition, there is a paucity of literature that investigates the perspectives of health care providers about the efficacy of parental presence in thes…
'People don't realise how much their past experiences affect them in adulthood': A qualitative study of adult siblings' experiences of growing-up with a sister/brother with a childhood life-limiting condition and their perceived support needs
Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite the increase…
Perceived impact of pediatric palliative care: caregiver's perspective
Background: Caregivers of children with complex chronic diseases (CCD) or life-limiting conditions (LLC) experience heightened strain. Understanding their concerns is essential for effective support, particularly in pediatric palliative care (PPC) where compas…
Perceived potentially inappropriate treatment in the PICU: frequency, contributing factors and the distress it triggers
BACKGROUND: Potentially inappropriate treatment in critically ill adults is associated with healthcare provider distress and burnout. Knowledge regarding perceived potentially inappropriate treatment amongst pediatric healthcare providers is limited. OBJECTIVE…
Perceptions of Interprofessional Practitioners Regarding Pediatric Palliative Transports
BACKGROUND: Pediatric palliative transport (PPT) is the practice of offering critically and terminally ill children requiring life-sustaining measures the opportunity to be discharged from the hospital to home or a hospice facility for end-of-life care. Althou…
Perinatal Palliative Care Fellowship: Development of a Novel Subspeciality Track in Palliative Medicine
Outcomes: 1. In reviewing trends in pediatric palliative medicine fellowship applicant pools and discussing the landscape of perinatal medicine, participants will understand the rationale for development of a new subspecialty fellowship track in hospice and pa…
Perinatal palliative care in low- and middle-income countries: a scoping review
Background: 2.4 million neonatal deaths and 2.6 million stillbirths occur each year. Over 98% of perinatal loss occurs in low- and middle-income countries. Despite the global burden of perinatal loss, access to relevant perinatal palliative and psychosocial ca…
PERINATAL PALLIATIVE CARE REQUIREMENTS IN THE WEST MIDLANDS: A SERVICE EVALUATION PROJECT
Objectives We aimed to understand the population of pregnant people and babies who could benefit from an expanded perinatal palliative care service in the West Midlands, due to lifelimiting conditions in foetuses or babies. Methods We reviewed antenatal care r…
Permanent cutaneous vesicostomy: a pragmatic approach to safely manage lower urinary tract dysfunction in pediatric patients with chronic and life-limiting conditions and neuropathic bladders
Introduction: Lower urinary tract dysfunction (LUTD) in cerebral palsy (CP) and other neuromuscular diseases can present with chronic retention that leads to hydronephrosis, recurrent urinary tract infections (UTI), and stone formation. Whenever the conservati…
Pilgrimage in pediatric palliative care: The journey of caregivers
Admission of terminally ill patients into pediatric palliative care remains a challenge in Mexico and Latin America, despite the multiple benefits of early transfer. In this context the trajectories in search of health care of patients and caregivers have not …
Place of death among children from 0 to 17 years of age: A population-based study from Sweden
Aim: The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died during the…
Places of Farewell: A Scoping Review Exploring Factors Influencing the Choice of Place of Death for Children when Death is Expected
Progression of ill health and death trajectories is different for children with a non-oncology diagnosis. As previous research has focused primarily on children with cancer diagnoses, this scoping review explored what factors influence the parent and/or child'…
Polypharmacy in Children with Medical Complexity: A Cross-Sectional Study in a Pediatric Palliative Care Center
Background: Children with medical complexity (CMC) often require multiple medications, leading to polypharmacy, which seems to be linked to adverse effects, administration errors, and increased caregiver burden. This study aimed to describe the prevalence of p…
Post-Traumatic Growth in Finnish Parents After the Traumatic Death of a Child
The traumatic death of a child may cause a wide range of emotional and behavioral responses in parents. In contrast to the extensive research and literature on the negative aspects of parental bereavement, the topic of post-traumatic growth in parents has rece…
PRECIOUS demonstrated satisfactory measurement properties for assessing the quality of care for children with serious illnesses
Objective: To determine the measurement properties of PRECIOUS, a parent-reported measure of Quality of Care (QoC) for seriously ill children across care settings and illness trajectories.
Study design and setting: Parents self-administered baseline and two-w…
Predictors of improvement in parental stress after the first three months at home with a medically fragile infant
Objectives Little is known about the early stress experiences of parents of infants with serious life-limiting/life-threatening conditions during the initial months after discharge from hospital. The aim of the study was to measure change, and predictors of ch…
Preparing for the Unimaginable: How Pediatric ICU Nurses Prepare Families for the Dying Process
Outcomes: 1. Identify key actions that help prepare families for the dying process. 2. Consider how the defined key actions may apply to other settings of practice. Key Message: Preparing families for end-of-life symptoms and circumstances may help minimize ad…
Prevalence and Mortality of Life-Threatening and Life-Shortening Diseases in Children and Adolescents in Germany
This study provides prevalence and mortality data for 0- to 19-year-old children and adolescents with medically documented life-threatening and life-shortening diagnoses in Germany. A secondary data analysis of more than 12 million insured persons documented b…
Prevalence of pain in the last 2 weeks of life in hospitalized pediatric patients
Abstract
Introduction: Pain is a very common symptom in children who have a complex, chronic, life-threatening or life-limiting disease, generating a negative impact on the quality of life of the child and his or her family. There is very limited evidence rega…
Primary palliative care integrated model in paediatric ICU: an international cross-sectional study
Objectives Numbers are rising of chronically and critically ill, technology-dependent children, who are admitted to paediatric intensive care units (PICUs). An integrated model of care (IMOC), that combines paediatric critical care and primary paediatric palli…
Procedural Interventions for Terminally Ill Children - Are We Aiding Palliation?
Objectives: Many children undergo surgery or an invasive procedure during their terminal hospital admission.1 The types of procedures, patients, and the intent of the procedures has not been well defined. Understanding these details may help pediatric surgeons…
Professional bereavement photography for perinatal loss: A mixed-methods study
Abstract
This study addresses research gaps regarding the impact of professional bereavement photography for perinatal loss. Utilizing a mixed-methods research design, 504 parents completed an online survey measuring their attitudes toward bereavement photogra…
Prognostic Disclosure to Dying Adolescents Against Parental Wishes: A Point-Counter Point Debate
An adolescent's last moment of life is an emotionally and medically complex time. Children may grapple with understanding the things happening to them and with grief of a future lost; caregivers struggle to simultaneously balance deep sorrow, hope, and love; a…