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 2301–2325 of 4332 publications
Telemedicine in children with medical complexity on home ventilation during the COVID-19 pandemic
Children with medical complexity (CMC) are patients with one or more complex chronic conditions dependent on medical technologies. In our unit (Pediatric Pulmonology and Respiratory Intermediate Care Unit, Department of Pediatrics, "Bambino Gesù" Children's Ho…
The butterfly pathway: Supporting families following the antenatal diagnosis of a life-limiting condition in a neonatal intensive care unit setting
Background: Perinatal palliative care pathways are highlighted as tools to improve care and achieve consistency for families facing a life-limiting diagnosis. There are inherent diagnostic and prognostic uncertainties associated with such conditions.This multi…
The Challenges, Coping Mechanisms, and the Needs of the Inhospital Parents Caring for Children with Life-limiting Neurological Disorders: A Qualitative Study
OBJECTIVES: Parents who have children with complex lifelong and life-limiting neurological conditions experienced many stresses and anxieties throughout their lives as caregivers. However, this information is still very limited. The study aimed to explore the …
The effect of multidrug-resistant organisms on social participation and quality of life in children with life-limiting conditions
BACKGROUND: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room or ward. Ho…
The effects of animal-assisted interactions on quality of life in children with life-threatening conditions and their parents
BACKGROUND: Children with advanced cancer and their primary caregivers may experience severe stress and anxiety in coping with their life-threatening condition. As a way to help reduce these stressors and increase overall quality of life, research suggests tha…
The impact of digital health interventions on the psychological outcomes of patients and families receiving paediatric palliative care: A systematic review and narrative synthesis
BACKGROUND: Digital health interventions are becoming increasingly important and may be particularly relevant for paediatric palliative care. In line with the aims of palliative care, digital health interventions should aim to maintain, if not improve, psychol…
The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review
CONTEXT: Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliativ…
The Limits of Resilience and the Need for Resistance: Articulating the Role of Music Therapy With Young People Within a Shifting Trauma Paradigm
A broad sociocultural perspective defines trauma as the result of an event, a series of events, or a set of circumstances that is experienced as physically or emotionally harmful or life threatening, with lasting impacts on an individual’s physical, social, em…
The Lived Experiences With Hope From Adolescents and Young Adults Who Have Advanced Cancer
Objectives
1. Describe the concept of hope based on perspectives of AYAs who experienced advanced cancer. 2. Differentiate the role hope has for AYAs before, during, and after experiencing cancer.
Context
In clinical care, addressing patients’ hopes may stimul…
The Most Important Aspects for a Good Death: Perspectives from Parents of Children with Cancer
A good death is an important concept in pediatric palliative care. To improve the quality of pediatric palliative care, it is imperative to identify which domain is most important for a good death among children with cancer and their parents. This study aimed …
The Mother Baby Comfort Care Pathway: The Development of a Rooming-In-Based Perinatal Palliative Care Program
BACKGROUND: Traditionally, the provision of comfort care and support during the dying process for infants born with life-limiting diagnoses has occurred in the neonatal intensive care unit (NICU). A major goal for the families of these infants is often the opp…
The Parental Experience of Caring for A Child with Pain and Irritability of Unknown Origin
Background and Objective
: Approximately 73% of children with severe neurological impairment (SNI) can experience episodes of pain and irritability often of unknown origin (PIUO). Limited research exists on how these experiences of PIUO may affect parental car…
The Pediatric Palliative Improvement Network: a national healthcare learning collaborative
BACKGROUND: Although multiple national organizations have created consensus guidelines and metrics for pediatric palliative care (PPC), standardized implementation and measurement has been challenging. In 2016, 6 PPC physician-experts in program development an…
The perinatal bereavement project: development and evaluation of supportive guidelines for families experiencing stillbirth and neonatal death in Southeast Brazil—a quasi-experimental before-and-after study
For most parents, getting pregnant means having a child. Generally, the couple outlines plans and has expectations regarding the baby. When these plans are interrupted because of a perinatal loss, it turns out to be a traumatic experience for the family. Valid…
The Phenomenon of Bereaved Parenting: An Integrative Review of Literature
Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial familial ro…
The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review
CONTEXT: Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown. OBJECTIVES: (1) To review existing evidence on the physical health of paren…
The radiotherapy utilization rate in pediatric tumors: An analysis of 13,305 patients
Purpose: Although the radiotherapy utilization rate (RUR) is determined for most adult cancers, it is seldom reported in childhood tumors, particularly in low- and middle-income countries (LMIC) where the majority of pediatric cancer patients reside. This stud…
Therapeutic letters: A qualitative study exploring their influence on the hope of parents of children receiving pediatric palliative care in Portugal
PURPOSE: The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters. DESIGN AND METHODS: A purposive sample of 10 parents of inp…
The relationship between proxy agency and the medical decisions concerning pediatric patients in palliative care: a qualitative study
Background: The children's agency and that exercised by parents and health professionals in palliative care, along with structural limitations imposed by the conditions of inequality, will provide a new perspective from medical anthropology and biomedicine to …
The Road to Readiness: Guiding Families of Children and Adolescents with Serious Illness Toward Meaningful Advance Care Planning Discussions
Seriously ill children, adolescents, and young adults (C-AYA) live with a heavy symptom burden, uncertain or poor prognoses, and evolving expectations of their disease course that require health care professionals (HCPs) to facilitate and maintain meaningful c…
The role of family adaptation in the transition to adulthood for youth with medical complexity: a qualitative case study protocol
Background For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more fragmented and unfa…
The role of perinatal palliative care following prenatal diagnosis of major, incurable fetal anomalies: a multicentre prospective cohort study
OBJECTIVE: To describe prenatal decision-making processes and birth plans in pregnancies amenable to planning perinatal palliative care. DESIGN: Multicentre prospective observational study. SETTING: Nine Multidisciplinary Centres for Prenatal Diagnosis of the …
The Role of Perinatal Palliative Care in Fetal Neurology
Many serious or life-threatening neurologic conditions are first diagnosed during the fetal period, often following a routine prenatal ultrasound or sonographic evaluation after an abnormal aneuploidy screen. Such conditions represent a worrisome or unexpected…
The Role of Physiotherapy in Pediatric Palliative Care: A Systematic Review
Pediatric palliative care (PPC) is a set of actions aimed at children who suffer from a severe or life-threatening disease to alleviate the symptoms of the disease and improve the quality of life of both the child and his/her family. One of the tools used to c…
The social and physical environmental factors associated with the play of children living with life threatening/limiting conditions: A Q methodology study
BACKGROUND: Living with a life threatening/limiting condition changes and challenges children's play. The environment is known to support participation in play, yet there is a lack of evidence highlighting its specific factors contributing to children's play. …