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 4076–4100 of 4332 publications
Parental Grief Following the Death of a Child from Cancer: The Ongoing Odyssey
BACKGROUND: The death of a child is a devastating event that results in profound grief and significant psychosocial and physical morbidities in parents. The parental grief journey is a complex phenomenon necessitating the utilization of newer models of bereave…
Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18
Trisomy 13 and 18 are life-limiting conditions for which a palliative approach is frequently recommended. The objective of this study was to examine parental goals/decisions, the length of life of their child and factors associated with survival. Parents of ch…
Parental involvement in neonatal critical care decision-making
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end …
Parental needs in infant's end of life and bereavement in NICU: A qualitative study
Background and Aims: Newborn death is an unexpected outcome for parents. Parents are faced with several needs in their infant's end-of-life. The health care team is responsible to meet these needs. This qualitative study aim was to explore parental needs in in…
Parental Perspectives of Communication at the End of Life at a Pediatric Oncology Institution
BACKGROUND: The interaction of health care providers and hospital staff with patients and families at the end of life affects the parental grief experience. Both verbal and nonverbal communication are key components of this interaction. OBJECTIVE: The study ob…
Parental Physical Proximity in End-of-Life Care in the PICU
OBJECTIVE: Health professionals in PICUs support both child and parents when a child's death is imminent. Parents long to stay connected to their dying child but the high-tech environment and treatment implications make it difficult to stay physically close. T…
Parenting in the face of childhood life-threatening conditions: The ordinary in the context of the extraordinary
OBJECTIVE: Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context. METHOD: Qualitative desc…
Parent Perspectives of Neonatal Intensive Care at the End-of-Life
This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the primary th…
Parent reported outcomes of quality care and satisfaction in the context of a life-limiting fetal diagnosis
OBJECTIVE: To identify which quality indicators (QI) predict patient satisfaction. METHODS: A cross-sectional design using a validated tool was administered using a Web-based platform. Parents (n = 405) who experienced a life-limiting fetal diagnosis and opted…
Parents' experience of a follow-up meeting after a child's death in the Paediatric Intensive Care Unit
OBJECTIVE: 'To identify parents' experience of a follow up meeting and to explore whether the conversation was adequate to meet the needs of parents for a follow-up after their child's death in the Paediatric Intensive Care Unit (PICU). DESIGN AND SETTING: Qua…
Parents' Experiences and Wishes at End of Life in Children with Spinal Muscular Atrophy Types I and II
OBJECTIVE: To explore experiences and wishes of bereaved parents concerning end-of-life care for their child with severe spinal muscular atrophy. STUDY DESIGN: A follow-up survey was conducted in 2013 on parents of deceased Swedish children who were born betwe…
Parents of children diagnosed with cancer: work situation and sick leave, a five-year post end-of-treatment or a child's death follow-up study
BACKGROUND: Cancer in a child is associated with a significant impact on parental employment. We assessed the proportions of parents of survivors and bereaved parents working and reporting sick leave five years after end of successful treatment (ST)/child's de…
Parent's Perspectives on the End-of-life Care of their Child with Cancer: Indian Perspective
Context: Parents report that end-of-life decisions are the most difficult treatment-related decisions that they face during their child cancer experience. Research from the parent's perspective of the quality of end-of-life care of their cancer children is sca…
Participation in a clinical trial for a child with cancer is burdensome for a minority of children
Aim: This study explored how parents who had lost a child to cancer felt about them taking part in a clinical trial. Methods: A retrospective questionnaire was sent to parents who had lost a child to cancer. They were asked whether their child took part in a c…
Partnership working between hospice and children's community nursing teams
This article describes the implementation and evaluation of a new partnership between a children's hospice service and an NHS children's community nursing team to support children's palliative care in the community. Aims and outcomes of the service were establ…
Patient End-of-Life Experiences for Pediatric Trainees: Spanning the Educational Continuum
Background End-of-life care for a child is an emotionally charged experience for pediatric trainees. Objectives Describe the progression of medical trainee experiences with end-of-life care and determine personal/professional experiences that facilitated integ…
Pediatric Cancer Patients' Important End-of-Life Issues, Including Quality of Life: A Survey of Pediatric Oncologists and Nurses in Japan
BACKGROUND: Research into the key themes and concepts of quality of life (QOL) relevant to the end-of-life (EOL) care of pediatric cancer patients in the Japanese context is imperative. OBJECTIVE: This study aimed at identifying the key items and constructive …
Pediatric hematology-oncology palliative care in Ile-de-France area. [French]
Purpose. ' The aim was to assess the need for palliative care by describing the pathway of care for children during their last three months of life treated for a cancer or hematology disease in Paris area and who died in 2010. This work was conducted by the Re…
Pediatric Oncology: Managing Pain at the End of Life
Pain is a common and highly distressing symptom in pediatric patients with advanced malignancies. Prompt recognition, assessment, and treatment of pain are necessary, especially at the end of life. Opioid medications remain the mainstay of treatment of maligna…
Pediatric out-of-hospital deaths following hospital discharge: a mixed-methods study
BACKGROUND: Out-of-hospital death among children living in resource poor settings occurs frequently. Little is known about the location and circumstances of child death following a hospital discharge. OBJECTIVES: This study aimed to understand the context surr…
Pediatric Palliative Care and Child Psychiatry: A Model for Enhancing Practice and Collaboration
As the field of Pediatric Palliative Care continues to develop, it is important to consider the scope of practice and the utility of collaboration with other specialties, including child and adolescent psychiatry. The integration of psychiatry and palliative m…
Pediatric palliative care and end of life outcomes for pediatric hematopoietic stem cell transplant recipients who do not survive
Background: Hematopoietic Stem Cell Transplant (HSCT) is intensive therapy delivered with curative intent, offering the possibility of cure for life-threatening conditions but with risk of serious complications and death. Whether pediatric palliative care (PPC…
Pediatric palliative care and hospice program development in 2016: Strategies for success in an ever-expanding world
Objectives * Propose pediatric program design or expansion based on newly acquired skills of defining a desirable and functional scope that aligns with health system's missions and values and identifies areas of potential growth and collaboration within the he…
Pediatric palliative care: Comprehensive support for children
Palliative Care (PC), is the set of actions and tools that seek relief from symptoms and suffering of patients and their families to diseases that threaten their lives. This support includes different types of resources covering the clinical, socio-economic, e…