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 2976–3000 of 4332 publications
Paediatric long-term home ventilation: Should we rethink social inclusion for these children?
Background: over the last 30 yrs, many studies have investigated long-term ventilatory support (LTVS), focusing primary on medical issues. Few researches have focused on social burden for families with a child in need of LTVS.
Objectives: aim of the study was…
Paediatric palliative care: a systematic review
Objectives To review literature relating to evidence, context and facilitation to describe knowledge translation in paediatric palliative care. Paediatric palliative care requires competences including both paediatric specialists as well as services that are d…
Pain coping strategies in children with cerebral palsy
AIM: To describe coping strategies in children and adolescents with cerebral palsy (CP), relative to age. METHOD: Patients were prospectively recruited from two paediatric rehabilitation centres in France. The Pediatric Pain Coping Inventory - French and Struc…
Palliative and end-of-life care for infants and their families in the NICU: Building a program of research
This article is a brief report on the building of a program of research to support palliative and end-of-life care for infants and their families in the neonatal intensive care unit.
Palliative care allocation among critically ill children is highly variable in the United States
Learning Objectives: Palliative Care (PC) is a scarce resource. Little is known about its allocation among critically ill children. Previously proposed criteria may help identify children who may benefit from PC. Method(s): This is a retrospective cohort study…
Palliative care and paediatric cardiology: current evidence and future directions
Although outcomes for children with heart disease have improved substantially over the past several decades, heart disease remains one of the leading causes of paediatric mortality. For children who progress to advanced heart disease, disease morbidity is high…
Palliative care integration in pediatric cardiac intensive care units: A novel champion-based model
Learning Objectives: Integration of pediatric palliative care (PPC) into the management of children with serious illness and their families is widely endorsed by international organizations and experts in the field as standard of care. However, timely referral…
Palliative Care in the Pediatric Emergency Department: Findings From a Qualitative Study
Study objective: Children with medical complexity represent a fragile population and account for the majority of patients followed in pediatric palliative care. Little is known in regard to the role of the emergency department (ED) in caring for the families o…
Palliative extubation: five-year experience in a pediatric hospital
OBJECTIVE: To present the characteristics of pediatric patients with chronic and irreversible diseases who underwent palliative extubation. METHOD: This is a descriptive analysis of a case series of patients admitted to a public pediatric hospital, with chroni…
Parental decision-making following a prenatal diagnosis that is lethal, life-limiting, or has long term implications for the future child and family: a meta-synthesis of qualitative literature
BACKGROUND: Information on the factors influencing parents' decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to explore t…
Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are livi…
Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study
Objectives To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).…
Parental Perspectives on Roles in End-of-Life Decision Making in the Pediatric Intensive Care Unit: An Integrative Review
Little is known about how parents perceive their role or the role of health care providers (HCPs) during end-of-life decision making (EOL DM) in the context of the pediatric intensive care unit (PICU). The authors searched CINAHL, PubMed, Ovid Medline, Web of …
Parental Strengths in Caring for Their Dying Child: Long-term Follow-up in Kenya
Research conducted using the Haley Transcultural Strengths Assessment Interview Guide used in several studies has identified 11 sources of strength routinely utilized by parents caring for their child with intensive needs and child in hospice/palliative care. …
Parental Use of Religion and Spirituality in Medical Decision-Making
New medical technology has extended children's lives, creating challenges for parental decision-making. Many parents utilize religion or spirituality (R/S). This study examined the semi-structured interviews of 24 parents who made significant medical decisions…
Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies
BACKGROUND: Parent empowerment is often an expressed goal in clinical pediatrics and in pediatric research, but the antecedents and consequences of parent empowerment are not well established. OBJECTIVE: The objective of this systematic review was to synthesiz…
Parents' acceptance and regret about end of life care for children who died due to malignancy
Purpose: To analyse the preference of end of life care place in paediatric oncology patients, and to understand the end of life care needs and regrets among the care givers. Method(s): This was an observational qualitative study. Parents of in-curable paediatr…
Parents' experiences of feeding, swallowing, and nutrition in children receiving palliative care
Purpose: Parents caring for children receiving palliative care due to life-threatening illnesses face tremendous stressors, including providing nutrition to their child. Very little is known about this experience or how parents manage nutritional needs amidst …
Parents' Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy: A Population Survey
OBJECTIVE:: This study aims to assess the experiences and wishes of parents of children with severe spinal muscular atrophy regarding information and decision-making throughout the course of the illness. STUDY DESIGN:: A full population survey, conducted in 20…
Parents' experiences of requests for organ and tissue donation: The value of asking
Objective: A proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ and tissue…
Parents' experiences of services for their child with a life-limiting neurodevelopmental disability
This study explored parents' experiences of services for children with life-limiting neurodevelopmental disabilities (LLNDD) using mixed methods. The study included a quantitative survey (n = 63) and qualitative interviews (n = 12), with a focus on integrating…
Parents' needs of support following the loss of a child to cancer: a Swedish, prospective, longitudinal, multi-centre study
Introduction: Parents' needs of support following the loss of a child to cancer and whether these needs are met are not fully known. This study aimed to describe parents' needs, opportunity, and benefit of support from healthcare professionals and significant …
Parents' perceptions of power wheelchair prescription for children with a neuromuscular disorder: a scoping review
Purpose: To conduct a scoping review of the published evidence on parents' perceptions of power wheelchair prescription for children with a neuromuscular disorder and clinicians' influence on timely wheelchair implementation. Method: Nine electronic databases …