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 1376–1400 of 4332 publications
Measuring Knowledge of Healthcare Providers on Pediatric Palliative Care with an Online Questionnaire Based on the National Core Curriculum in Italy
There is a lack of highly reliable tools evaluating healthcare professionals' competences on Pediatric Palliative Care (PPC) and Pain Therapy (PT). The aim of this study is to document the development of an online questionnaire to assess Perceived, Wished and …
Measuring Pediatric Palliative Care Quality: Challenges and Opportunities
Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their families requ…
Mentoring the Wellbeing of Specialist Pediatric Palliative Care Medical and Nursing Trainees: The Quality of Care Collaborative Australia
BACKGROUND: The Quality of Care Collaborative Australia (QuoCCA), working across 6 tertiary centers throughout Australia, builds capability in the generalist and specialist pediatric palliative care (PPC) workforce, by providing education in metropolitan and r…
Metaphors and decision making in parental blogs about their children with life-limiting diseases: who's afraid of the war metaphor?
The use of metaphors aids understanding by allowing us to think of complex problems in terms of relatively simple and more concrete information. As such, metaphors shape thought and guide future action. While metaphors are known to play a role in medical treat…
Mixed-methods analysis of decisional regret in parents following a child's death from cancer
BACKGROUND AND OBJECTIVES: Decisional regret is common in bereaved parents. We aimed to identify factors associated with and to explain patterns of parental decisional regret. METHODS: We used a convergent mixed-methods design including quantitative items and …
Moral experiences of children with medical complexity: A participatory hermeneutic ethnography in Brazil
Children with medical complexity have been defined within the literature as chronically ill and medically fragile children with complex care needs. Care for these children raises significant ethical and moral considerations. Therefore, this participatory ethno…
Music therapy in paediatric palliative care: A scoping review
The aim of this scoping review is to summarise the existing empirical evidence and produce an overview of the ways in which music therapy in paediatric palliative care is described in the literature, with a specific focus on hospital-at-home. It was performed …
Muslim perspectives on palliative care in perinatal and neonatal patients: a mini-review
Muslims comprise nearly a quarter of the worldwide population, with significant populations in the United States, Canada, and Europe. As clinicians, it is important to be familiar with Islamic religious and cultural perspectives on medical treatment, life-prol…
'My Life Is a Mess but I Cope': An Analysis of the Language Children with Life-limiting and Life Threatening Illnesses Use to Describe their Own Condition
Background/aims: Children with life-limiting and life-threatening conditions are rarely involved in research. Engaging them directly enables them to express the meaning of their condition in their own words. This study aimed to explore the language children us…
Navigating a child's best interest: the essential role of palliative care
In June, 2023, BBC One aired Jack Thorne's highly anticipated series Best Interests, the fictional story of Marnie (played by Niamh Moriarty), a teenager with a rare form of muscular dystrophy, whose rapid health deterioration forces her family to face the com…
Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit
Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest, finding an op…
Navigating two 'truths': a qualitative study of physician-led end-of-life decision-making for children with life-limiting conditions
OBJECTIVE: To describe how paediatricians undertake the process of end-of-life decision-making for a child with a life-limiting condition who is unable to participate in decision-making for themselves. DESIGN: A qualitative phenomenological study using semistr…
Need for palliative care from birth to infancy in pediatric patients with neurological diseases
BACKGROUND: Palliative care is a comprehensive treatment approach that guarantees comfort for pediatric patients and their families from diagnosis to death. The techniques used for neurological patients in the field of palliative care can enhance the quality o…
Neonatal euthanasia in the context of palliative and EoL care
Neonatal deaths can be categorized in 5 modes along the dimension of intervention and physiology. This classification can be helpful to analyze the choices that can be made in end-of-life care in the NICU. In the Netherlands, neonatal euthanasia became an opti…
Neonatal intensive care unit nurses knowledge and attitude toward neonatal palliative care: review of the literature
AIM: To review studies regarding neonatal nurses' knowledge and attitude toward neonatal palliative care (NPC). METHOD: The researchers searched internet sources such as Google Scholar for NPC, Nurses, Knowledge, Attitude, and Educational Intervention. RESULTS…
Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit
Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the United Kin…
Neonatal palliative care: Assessing the nurses educational needs for terminally ill patients
BACKGROUND: For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative care for neo…
Neonatal serious illness: operational definition
OBJECTIVES: (1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness criteria. MET…
Nurses' effort for providing end-of-life care in paediatric oncology: a phenomenological study
BACKGROUND: Many children with cancer are hospitalised before the end of life and need special care. To improve the delivery of care for children, it is necessary to understand the insights, emotions and feelings of nurses. AIM: This study aimed to explore the…
Nursing care and nurses' understandings of grief and bereavement among patients and families during cancer illness and death – A scoping review
Grief and bereavement is often present among patients and families during courses of cancer. Offering support for both patients and families is essential in the context of cancer nursing. Present scoping review offers an overview of existing knowledge, which c…
Nursing Practice and Care Structure for Children and Their Families in Need of Pediatric Palliative and End-of-Life Care in Japan: A Nationwide Survey
Many nurses experience difficulties in pediatric palliative care practice. The study aimed to describe the current situation and structure of pediatric palliative and end-of-life care nursing practices for children and their families in Japan. The research sub…
Optimizing resource utilization: Palliative care consultations in critically ill pediatric trauma patients
The American College of Surgeons Trauma Quality Improvement Program (TQIP) and Committee on Trauma released a best practice guideline for palliative care in trauma patients in 2017. Utilization of pediatric palliative care services for pediatric trauma patient…
Paediatric end-of-life care at home
BACKGROUND: A terminally ill child should have the possibility to be at home with their family during the end of life. Provision of care from primary care nurses (PCNs) is crucial, but no model exists on how specialised paediatric palliative care teams (SPPCTs…
Paediatric palliative care for the generalist
Palliative care has been defined as 'the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life'. Unfortunately, palliative care and especially paediatric pa…
Paediatric Palliative Care in a Reference Centre of Inherited Metabolic Diseases
INTRODUCTION: Paediatric palliative care (PPC) has a significant role in improving the quality of life of children with life-limiting or life-threatening illnesses, diminishing symptom burden, and providing holistic support to patients and families. Inherited …