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 3351–3375 of 4332 publications
Palliative care professional’s perceptions of barriers and challenges to accessing children’s hospice and palliative care services in South East London: A preliminary study
Objectives: Several barriers have been identified as preventing or delaying access to children’s palliative care services. The aim of this study is to further explore such barriers from palliative care professionals’ perspective from two London boroughs. Metho…
Palliative care referral patterns for children with cancer: A three-year retrospective study
Background/Objectives: Although Pediatric palliative care (PPC) has developed worldwide with the increasing number of children with serious illness, the concept of Pediatric palliative care is still unfamiliar in Asia. We report on Pediatric cancer patient ref…
Parental assessment of comfort in newborns affected by lifelimiting conditions treated by a standardized neonatal comfort care program
Objective:To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program.Study Design:Participants were parents (n=35 families) who …
Parental distress and desire for information regarding long-term implications of pediatric cancer treatment
BACKGROUND: Parents of children with cancer have unmet information needs regarding future limitations resulting from cancer or its treatment. Prior research has demonstrated that, in early care discussions, clinicians focus on the acute effects of therapy rath…
Parental knowledge and opinions on palliative care for children
Purpose: A pilot study to ascertain awareness and understanding of palliative care among parents of pediatric patients at a single academic medical center.
Parental Personal Sense of Duty as a Foundation of Pediatric Medical Decision-making
We describe a model of parental (or more broadly, surrogate) decision-making that includes 5 aspects of decision-making that other models simplify or omit. First, we describe problem structuring recognizing that parents often face multiple potential problems o…
Parenting in Childhood Life-Threatening Illness: A Mixed-Methods Study
Background: Parenting children with life-threatening illness (LTI) and their healthy siblings requires parents to consider their various needs. Objective and Methods: We conducted a concurrent, cross-sectional mixed-methods study to describe challenges parents…
Parent Perspectives of Receiving Early Information About Palliative and End-of-Life Care Options From Their Child's Pediatric Providers
BACKGROUND: Parents of children diagnosed with cancer may experience decision regret about cancer treatment decisions and dissatisfaction with the perceived clarity in information received from their child's providers. OBJECTIVE: The aim of this study was to d…
PARENTS 2 study protocol: pilot of Parents' Active Role and ENgagement in the review of Their Stillbirth/perinatal death
BACKGROUND: The perinatal mortality review meeting that takes place within the hospital following a stillbirth or neonatal death enables clinicians to learn vital lessons to improve care for women and their families for the future. Recent evidence suggests tha…
Parents with a child throughout the end-of-course: A qualitative study
Background/Objectives: The purpose of the current study was to describe the lived experience of parents with a child with incurable cancer at the end of life (EOL). Design/Methods: A qualitative study was conducted following a phenomenological approach. Ten pa…
Partnering with families of children with medical complexity to evaluate interventions
KEY POINTS
A key goal in health care is to improve outcomes that matter most to patients.[1][1] This is a poignant aim for a small but very important group: children with medical complexity and their caregivers. Children with medical complexity are defined by …
Pathfinders: Promoting healthy adjustment in bereaved children and families
Pathfinders is a 10-session program developed in a community setting to creatively address the diverse needs of bereaved children and families, prevent complications of grief and trauma, and promote healthy adaptation. It is an accessible, grief-focused and tr…
Pattern of Readmissions Among Children with Multiple Chronic Conditions versus Children with No Chronic Conditions
Background: Children with complex chronic conditions account for a disproportionate number of hospital readmissions and are significantly more likely to be readmitted than other children. Little is known about when children with multiple conditions are at high…
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…
Pccm fellows' palliative care knowledge and attitudes surrounding a pilot educational initiative
Learning Objectives: The importance of Palliative and End of Life Care (PC, EOL) for children in the PICU with life-limiting, chronic conditions is increasingly recognized (1). Robust PC improves outcomes by symptom score, cost, and length of life (2-4). Pedia…
Pediatric Deaths Attributed to Complex Chronic Conditions over 10 Years in Korea: Evidence for the Need to Provide Pediatric Palliative Care
BACKGROUND: Pediatric palliative care (PPC) is the active total care of children suffering from life-threatening illnesses. Palliative care includes symptom management, psychosocial support, and end-of-life care. Despite significant advances in disease diagnos…
Pediatric intensivist end-of-life practices and attitudes in Vietnam
Learning Objectives: Although there has been a significant reduction in childhood mortality, Vietnam's under-five and neonatal mortality rate still stand at 22 and 11 per 1,000 live births, respectively. Few studies exist on physician attitudes towards life-su…
Pediatric Oncology Providers' Perceptions of a Palliative Care Service: The Influence of Emotional Esteem and Emotional Labor
Context: Pediatric palliative care consults for children with cancer often occur late in the course of disease and close to death, when earlier involvement would reduce suffering. The perceptions that pediatric oncology providers hold about the pediatric palli…
Pediatric palliative care-child life beyond the hospital
Program Goals: Historically Child Life Specialists (CCLS) have done the majority of their work in healthcare settings such as pediatric acute care hospitals and clinics. As children are living longer with chronic diseases, CCLS are using their knowledge and sk…
Pediatric Palliative Care in Iran: Applying Regionalization of Health Care Systems
Background: Establishing palliative care services is a priority in the health system of Iran. Considering the necessity of integrating these services into the health system, this study aimed to explore the stakeholders' perceptions about the provision of a con…
Pediatric Patients Receiving Specialized Palliative Home Care According to German Law: A Prospective Multicenter Cohort Study
In Germany, every child with a life-limiting condition suffering from symptoms that cannot sufficiently be controlled is eligible by law for specialized pediatric palliative home care (SPPHC). It is the aim of this study to describe the demographic and clinica…
Peer-designed parents' bereavement panel: Exposing first-year medical students to pediatric end-of-life care
Program Goals: Despite the Liaison Committee for Medical Education (LCME) mandatory requirement for the incorporation of end-of-life care education into medical school curriculum, very few studies have reported successful approaches, and standardization across…
Peer support for bereaved children: Setting eyes on children's views through an educational action research project
This article investigates children's views on providing peer support to bereaved children. The data (pre- and postinterviews and written documents) come from an action research study of a teacher-researcher and her 16 children aged 10-11 years old. Analysis of…
Perceived challenges in pediatric palliative care among doctors and nurses in Hong Kong
This study aims to examine perceived challenges, including knowledge, skills, self, and work environment, of professionals in providing pediatric palliative care (PPC) in Hong Kong and the differences in perceived challenges between groups. A total of 680 pedi…