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 176–200 of 206 publications
Antenatal palliative care consultation: implications for decision-making and perinatal outcomes in a single-centre experience
BACKGROUND: Some pregnant patients with complex fetal anomalies meet with paediatric palliative care subspecialists prior to delivery, but referral to antenatal palliative care consultation (APCC) is not standard. Little is known about its role in perinatal de…
A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planning
The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14-21 years with HIV/AIDS and their families were randomize…
‘Best interests’ in paediatric intensive care: an empirical ethics study
Objective In English paediatric practice, English law requires that parents and clinicians agree the ‘best interests’ of children and, if this is not possible, that the courts decide. Court intervention is rare and the concept of best interests is ambiguous. W…
Decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and thematic synthesis
BACKGROUND: In the last decade, the number of children with life-limiting and life-threatening conditions in England has almost doubled, and it is estimated that worldwide, there are 1.2 million children with palliative care needs. Families and professionals c…
Decision making in pediatric oncology: Views of parents and physicians in two European countries
BACKGROUND: Decision making is a highly complex task when providing care for seriously ill children. Physicians, parents, and children face many challenges when identifying and selecting from available treatment options., METHODS: This qualitative interview st…
Implementation of Pediatric Palliative Care (PPC) in a Neonatal Intensive Care Unit (NICU) in St.Gallen
Introduction: The Children's Hospital of Eastern Switzerland (OKS) is a hospital with 76 beds. A multiprofessional PPC and ethic team was established in 2007. After nine years of intensive development our PPC program reached full size (notification D) of sanaC…
Licensing Surrogate Decision-Makers
As medical technology continues to improve, more people will live longer lives with multiple chronic illnesses with increasing cumulative debilitation, including cognitive dysfunction. Combined with the aging of society in most developed countries, an ever-gro…
Parent Distress and the Decision to Have Another Child After an Infant's Death in the NICU
OBJECTIVE: To examine associations among parent perceptions of infant symptoms/suffering, parent distress, and decision making about having additional children after an infant's death in the NICU.
DESIGN: Mixed-methods pilot study incorporating mailed surveys …
Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT
Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet, like careg…
Upholding Ethical Decision Making in Children With Life Limiting Illnesses
Emeritus Professor Edward Alan Glasper from the University of Southampton discusses the complexities of care delivery to children in hospital who have life limiting medical conditions.
"We just follow the patients' lead": Healthcare professional perspectives on the involvement of teenagers with cancer in decision making
PURPOSE: We report on an in-depth interview and participant observation study that uses data from multiple sources to determine how the involvement of teenagers with leukaemia is understood and enacted in healthcare. In this article, we investigate healthcare …
What if the baby doesn't survive? Health-care decision making for ill newborns in Ethiopia
Despite efforts to improve access to and quality of care for newborns, the first month after birth remains the most dangerous period of life. Given high neonatal mortality in low-income countries, saving newborn lives is a key priority for global and national …
End-of-life decision-making for children with severe developmental disabilities: The parental perspective
BACKGROUND AND AIMS: The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence…
Religion and Spiritual Care in Pediatric Intensive Care Unit: Parental Attitudes Regarding Physician Spiritual and Religious Inquiry
OBJECTIVE: Parents of seriously ill children require attention to their spiritual needs, especially during end-of-life care. The objective of this study was to characterize parental attitudes regarding physician inquiry into their belief system. MATERIALS AND …
What are the limits of parental authority? Pediatric bioethics and the law
Objectives * Distinguish between the "best interest standard" and "the harm principle" in the evaluation of familial medical decision making in pediatrics and analyze the strengths and weaknesses of each. * Identify key legal cases in pediatrics and explain th…
End-of-life decisions in perinatal care: A view from health-care providers in Mexico
OBJECTIVE: To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. MATERIALS AND METHODS: An anonymous questionnaire was administered to physicians, social workers, and nurses i…
Cultural and religious considerations in pediatric palliative care
OBJECTIVE: A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is e…
Forgoing life support: how the decision is made in European pediatric intensive care units
PURPOSE: To determine how decisions to forgo life support are made in European pediatric intensive care units (PICUs).
METHODS: A multicenter, prospective study, the Eurydice II study, among 45 PICUs: 20 in France, 21 in Northern/Western (N/W) European countri…
End- of- life decisions and minors: do minors have the right to refuse life preserving medical treatment? A comparative study
The principles of the right to informed consent and informed refusal are quite clear for competent adult patients. The right of a competent adult patient to give his informed consent before medical treatment can be started, is a patients' right that is recogni…