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 1026–1050 of 4332 publications
Nurses' perceptions of compassionate care in pediatric oncology: a qualitative interview study
BACKGROUND: Compassion is a crucial aspect in the management of pediatric oncology patients as it has the potential to enhance nurse satisfaction levels, thereby further enhancing the quality and safety of the care they deliver. This study aimed to investigate…
Nurses' Perspectives Regarding Challenges of Providing Perinatal/Neonatal End-of-Life Care in a Regional Hospital: An Exploratory Qualitative Study
AIM: This qualitative study aimed to explore nurses' perspectives regarding the challenges of providing perinatal/neonatal end-of-life care in a regional hospital.
METHOD(S): This exploratory qualitative study was conducted with 20 nurses working in Turkey. St…
Nursing Perspective of Providing Palliative Care to the Children—A Narrative Review
Introduction Palliative care of children (PCC) is a philosophical and a structured approach to providing tailored care to children with life-threatening diseases. Understanding the role of nurses and empowering them to take up the role of palliative care nurse…
Nursing Students' Volunteer Experiences of Interacting with Children Receiving Pediatric Palliative Care: A Qualitative Study
Background/objectives: Pediatric palliative care refers to active, holistic care that provides support not only for families but also for the physical, psychological, social, and spiritual needs of pediatric patients with severe life-threatening diseases. Nurs…
Nurturing hope: pioneering paediatric palliative care in Pakistan
My colleagues often say that seeing me (Resham) standing beside a patient's bed or lingering outside a child's room feels like a sign that the malik-ul-maut, or the angel of death, is near. For a long time, most health-care professionals perceived my role in t…
'Of course you crash' Parenting a young child with neurodevelopmental difficulties.
BACKGROUND: Parents of children with neurodevelopmental disorders often experience heightened levels of parenting stress and diminished well-being. However, less is known about the well-being of parents whose children exhibit symptoms of neurodevelopmental dis…
Oral feeding practices in medically complex infants receiving prolonged high-flow nasal cannula support: A retrospective cohort study
Aim: To characterise the feeding profile and care pathway for infants receiving prolonged high-flow nasal cannula (HFNC) respiratory support for management of a chronic condition at one facility from January to December 2021. Methods: Data regarding medical hi…
Outcomes of critically ill children with pre-existing mental health conditions
Importance: Critically ill children with pre-existing mental health conditions may have an increased risk of poor health outcomes. Objective: We aimed to evaluate if pre-existing mental health conditions in critically ill pediatric patients would be associated…
Outpatient Pediatric Palliative Care Development: Guidance on Building Sustainable Programs
Context: As pediatric palliative care (PPC) expands within institutions and nationally, little guidance is available on building outpatient programs.
Objective(s): We asked outpatient PPC (OPPC) program leaders in the United States about clinic development exp…
Paediatric Nurses' Personal Accounts of Being Told Not to Disclose Information to Children With Serious Illness—An Interpretative Phenomenological Study
Aims
To explore the experiences, and perceptions of nurses who are told to withhold clinical information from children diagnosed with serious illnesses.
Design
An interpretative qualitative phenomenological design was used for the study. Sampling was purposiv…
Paediatric oncologists' perspectives on Strategic solutions to develop Integrated Cancer Palliative Care: feedback intervention theory as an explanatory Framework
Background
Globally, children with cancer often experience delays in palliative care referral or are infrequently referred. Therefore, we conducted a qualitative study to gain insight from paediatric oncologists into what enables or deters palliative care refe…
Paediatric Palliative Care and Anticipatory Prescribing: Just Wasteful Are We?
Aims A fundamental right for patients and their families presented with life-limiting condition, is maintaining choice, in terms of place of care and of death, with evidence to suggest that most patients and their families would prefer home.1 Numerous studies …
Paediatric palliative care in Aotearoa New Zealand-current state and future direction
This paper seeks to explore the current state of paediatric palliative care in Aotearoa New Zealand. The low priority afforded to paediatric palliative care for more than two decades has had a significant impact on service provision, education and research wit…
Paediatric palliative care in cancer
More than 21 million children globally need access to palliative care (PC) - including children with cancer. Providing Paediatric Palliative Care (PPC) for children with cancer is an ethical imperative with pain relief being recognised as a human right and an …
PAEDIATRIC TO ADULT PALLIATIVE CARE - IS THERE A PRESCRIPTION FOR TRANSITION?
Objectives The number of children in the UK living with a life-limiting condition is rising year-on-year.1 The average life expectancy associated with many of these conditions also continues to increase and, consequently, more children are surviving into young…
Palliative Care for Dialysis-Dependent Pediatric Patients: A Survey of Providers, Nurses, and Caregivers
BACKGROUND: Dialysis-dependent pediatric patients and their families face significant biopsychosocial burdens and low health-related quality of life. Palliative care consultations can alleviate some degree of suffering for patients and families but remain unde…
Palliative Care for Infants in the Neonatal Intensive Care Unit: A Scoping Review
This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases (PubMed, Cochrane…
Palliative Care for Newborns in India: Patterns of Care in a Neonatal Palliative Care Program at a Tertiary Government Children's Hospital
Neonatal palliative care is a specialized area within children's palliative care, which focusses on the needs of infants with life-limiting or life-threatening conditions. Nearly one quarter of global neonatal deaths occur in India, where neonatal palliative c…
Palliative Care for Pediatric Urology
Palliative care in the field of urology has largely been limited to adult oncologic conditions. Although there is a plethora of established literature suggesting the advantageous impact of palliative care, there is limited integration of palliative care in adu…
Palliative Care in the Neonatal Intensive Care Unit: An Evolutionary Concept Analysis of Uncertainty in Anticipated Loss
Background: Although the concepts of uncertainty and anticipated loss have been explored in a variety of contexts, advances in genetic testing and life-sustaining technology rendered changes in the care of medically complex infants. The separate concepts no lo…
Palliative Care in the Pediatric Intensive Care Unit
Communication is a central aspect of nursing care and is especially important when pertaining to progressive illnesses and end of life. This article reviews basic palliative care terminology and outlines a variety of communication frameworks from the "dos" to …
Palliative Care Outcomes for Critically ill Children After Rapid Whole Genome Sequencing
Abstract
Objectives: Clinical utility of rapid whole genome sequencing (rWGS) has been reported in 30-70% of pediatric ICU patients who receive a molecular diagnosis. Rapid molecular diagnostic techniques have been increasingly integrated into critical care, y…
Palliative Home Visit Intervention and Emergency Admission in Pediatric Cancer Children: A Randomized Controlled Trial
Palliative care model can be carried out at home, in the community, or in long-term home care. Home visits in palliative care have an important role in providing continuity of care and psychosocial support to both the patient and their parents/caretakers. This…
Palliative sedation in pediatric patients with advanced cancer in palliative care
Palliative care (PC) plays a fundamental role in the pediatric population suffering from cancer, with few publications on the palliative sedation (PS) procedure in this group of patients. Objective: to describe the characteristics of patients treated in the PC…
Palliative team involvement in end-of-life care for Jewish and Muslim children in Jerusalem: A unique clinical and cultural context
Abstract
Objectives: Pediatric palliative care services improve the quality of life for children with life-limiting and life-threatening diseases, although little has been published about variation based on cultural and religious factors. This article sets out…