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 1–18 of 18 publications
Work-related quality of life in professionals involved in pediatric palliative care: a repeated cross-sectional comparative effectiveness study
Background: Working in pediatric palliative care (PPC) impacts healthcare and allied professionals' work-related quality of life (QoL). Professionals who lack specific PPC training but who regularly provide services to the affected children have articulated th…
The funding of specialised paediatric palliative care in Switzerland: a conceptualisation and modified Delphi study on obstacles and priorities
BACKGROUND: Effective funding models are key for implementing and sustaining critical care delivery programmes such as specialised paediatric palliative care (SPPC). In Switzerland, funding concerns have frequently been raised as primary barriers to providing …
Bereaved parents' perspectives on their child's end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study
Background: Paediatric Palliative Care (PPC) focuses on ensuring the best possible quality of life for the child and his/her family by extending beyond the physical domain into psychosocial and spiritual wellbeing. A deep understanding of what is important to …
Comparison of End-of-Life Care Practices Between Children With Complex Chronic Conditions and Neonates Dying in an ICU Versus Non-ICUs: A Substudy of the Pediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) Project
OBJECTIVES: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU. DESIGN: Substudy of a nation-wide retrospective chart revie…
Barriers to Palliative Care in Pediatric Oncology in Switzerland: A Focus Group Study
Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team that is ma…
The conceptual understanding of pediatric palliative care: A Swiss healthcare perspective
Background: Health care providers' perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health car…
Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children
Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping capacities are …
Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses
Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viabili…
Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records
Purpose: This study examined the provision of palliative care and related decision-making in Swiss pediatric oncology settings. The aim was to determine if and when children who died from cancer received palliative care, whether there were differences by cance…
Patterns of paediatric end-of-life care: A chart review across different care settings in Switzerland
Background: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of pa…
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…
End-of-life decisions for extremely preterm infants - a matter of language, gender and education?
Most of the paediatric patients who die are neonates. Pregnancy complications, including extreme prematurity, childbirth and congenital malformations, account for more deaths in childhood than malignancies and accidents combined, both in high- and low-resource…
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…
Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology
Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-g…
"You Can Only Give Warmth to Your Baby When It's Too Late": Parents' Bonding With Their Extremely Preterm and Dying Child
This study on end-of-life decisions in extremely preterm babies shows that the parents under study experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the neonatal intensive care unit (NICU), the physical …
The needs of professionals in the palliative care of children and adolescents
UNLABELLED: The main objectives of this qualitative study were to describe the perceptions and needs of pediatric health care professionals (HCPs) taking care of children with palliative care needs and to develop a concept for the first Center of Competence fo…
Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups
The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were defined: (a) canc…
Prolonged Grief, Autobiographical Memory, and Its Interaction With Value Orientations in China and Switzerland
As a psychopathological function of prolonged grief (PG) disorder, disruptions in autobiographical memory have been shown in bereaved individuals in terms of preferred access of loss-related memory and reduced specificity in non-loss-related memory. The presen…