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 4001–4025 of 4332 publications
Impact of early palliative care intervention on maternal stress in mothers of infants prenatally diagnosed with single ventricle heart disease: A randomized clinical trial
Background: Children with single ventricle (SV) cardiac defects requiring staged palliation have a high risk of mortality and receive invasive and complex care, resulting in significant maternal stress. In other complex, life-limiting illnesses among children,…
Impact of holding the baby following stillbirth on maternal mental health and well-being: findings from a national survey
OBJECTIVES: To compare mental health and well-being outcomes at 3 and 9 months after the stillbirth among women who held or did not hold their baby, adjusting for demographic and clinical differences. DESIGN: Secondary analyses of data from a postal population…
Impact of talking to children with cancer about their disease and treatment on anxiety level and fears
PURPOSE: The purpose of the current study was to investigate whether talking to children with cancer about their disease and treatment effects on anxiety level and fears. Obviously, it is a devastating experience for parents to learn that their child has a lif…
Implementing early palliative care education in cystic fibrosis
Background: People with CF and their families carry the burden of life-limiting illness. Palliative care enhances quality of life for people with serious and chronic illnesses. Opportunities are numerous to introduce palliative care before patients with CF dev…
Improving and validating children's nurses communication skills with standardized patients in end of life care
Children's nurse education is experiencing increases in recruitment targets at the same time that clinical placements are decreasing. With regard to end-of-life care, it is has become a challenge to ensure that all students come into contact with a satisfactor…
Improving training in palliative care for pediatric fellows e a simulation-based multi-institution trial
Objectives * Describe different methods of palliative care education, including simulation-based education and didactic education. * Delineate differences between pediatric fellow self-assessment data and external reviewer data of fellow performance. * Describ…
Information and Communication Needs of Parents in Infant End-of-Life: A Qualitative Study
Background: Hospitalization of a neonate in the neonatal intensive care unit (NICU) can be a stressful event for parents. They need specific information and communication to alleviate their stress, but these parental needs are not met by NICU staff. Exploratio…
Integrating palliative care in pediatric oncology: An evolving paradigm for comprehensive cancer care
Background: The demonstrated benefit of integrating palliative care (PC) into cancer treatment has triggered an increased need for PC services. The trajectory of integrating PC in comprehensive cancer centers, particularly pediatric centers, is unknown. We des…
Integrating palliative care into school communities
Background: Historically, the social aspects of death, dying and bereavement have been given insufficient attention by palliative care services; this has had an adverse effect on how patients and their families experience end-of-life and bereavement. New appro…
Integrating Pediatric Palliative Care into the School and Community
Children and adolescents with complex chronic conditions often receive pediatric palliative care (PPC) from health care professionals. However, children's needs exist both in a health care context and in the community where children interact with peers, includ…
Investing in Uncertainty: Young Adults with Life-Limiting Conditions Achieving Their Developmental Goals
BACKGROUND: With improvements in pediatric care and technology, more young adults (YAs) with life-limiting conditions (LLCs) are surviving into adulthood. However, they have limited expectations to live beyond the first decade of adulthood. This study describe…
In what circumstances will a neonatologist decide a patient is not a resuscitation candidate?
OBJECTIVE: The purpose of this study was to determine the opinions of practising neonatologists regarding the ethical permissibility of unilateral Do Not Attempt Resuscitation (DNAR) decisions in the neonatal intensive care unit. STUDY DESIGN: An anonymous sur…
Is it taking longer to die in paediatric intensive care in England and Wales?
Introduction All-cause infant and childhood mortality has decreased in the UK over the last 30 years. Advances in paediatric critical care have increased survival in paediatric intensive care units (PICUs) but may have affected how and when children die in PIC…
Keeping all options open: Parents' approaches to advance care planning
BACKGROUND: Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP. …
Knowledge Translation from Research to Clinical Practice: Measuring Participation of Children with Disabilities
This knowledge translation project was conducted to increase occupational therapy practitioners' awareness of the importance of measuring participation of children with disabilities. The Knowledge to Action process framework (KTA framework) guided knowledge tr…
Kraft S: Children's palliative care
Children's palliative care, where does it come from and for whom is this service? What is the difference between hospices for adults and hospices for children and youngsters? How many of these services does a country like Germany need? How are these institutio…
Legal and ethical issues in neonatal nursing
Neonatal nurses regularly face complex legal and ethical dilemmas. This article discusses the hypothetical case of Jack, a two-day-old infant, born at 39 weeks' gestation, and diagnosed with trisomy 13 (syndrome), a life-limiting condition and being cared for …
Lethal fetal abnormalities: how to approach perinatal palliative care?
OBJECTIVE: Some of the antenatally diagnosed fetal pathologies are unlikely to get compatible with life. Still some women choose to continue with pregnancy. Subsequently, perinatal palliative care (PPC) has become a constructive demarche in such situations. Ou…
Life and Medical Ethics in Pediatric Neurosurgery
Ethical issues in the field of pediatric neurosurgery, including prenatal diagnosis, palliative care for children with an intractable serious disease, and medical neglect, are discussed. An important role of medicine is to offer every possible treatment to a p…
Life transitions of adolescents and young adults with life-limiting conditions
AIMS: A systematic review was conducted to appraise and classify evidence related to the life transitions of adolescents and young adults with life-limiting conditions. METHODS: The databases searched were MEDLINE, CINAHL, PsycINFO, CancerLit, and AMED. Method…
Like being covered in a wet and dark blanket-parents' lived experiences of losing a child to cancer
Background/Objectives: Purpose: The aim of this study was to illuminate parents' lived experiences of losing a child to cancer. Design/Methods: Method: Interviews and written narratives about parents' experiences of losing a child to cancer were gathered from …
Limiting and Withdrawing Life Support in the PICU: For Whom Are These Options Discussed?
OBJECTIVES: Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed limitation or wit…