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 3451–3475 of 4332 publications
The role of the neuropediatrician in pediatric intensive care unit: Diagnosis, therapeutics and major participation in collaborative multidisciplinary deliberations about life-sustaining treatments' withdrawal
BACKGROUND: In Pediatric Intensive Care Unit (PICU) two types of population require the intervention of neuropediatricians (NP): chronic brain diseases' patients who face repetitive and prolonged hospitalizations, and patients with acute brain failure facing t…
The timing and circumstances of the implementation of pediatric palliative care in Hungarian pediatric oncology
Despite the continuous improvement of pediatric palliative care, medical professionals still face various barriers regarding its implementation; our aim was to investigate this question in Hungarian pediatric oncology practice. Structured interviews were carri…
The Unfavorable Alliance of Pain and Poor Sleep in Children with Life-Limiting Conditions and Severe Psychomotor Impairment
A high prevalence of sleep problems exists in children and adolescents with life-limiting conditions (LLC) and severe psychomotor impairment (SPMI). This study aimed to compare the impacts of various child-related (pain, epilepsy, repositioning, medical care) …
The unique grief of grandparents
The article discusses a study which showed that grandparents have to be
"They Say I Should not Think About It:": A Qualitative Study Exploring the Experience of Infant Loss for Bereaved Mothers in Kumasi, Ghana
Despite the high rate of infant mortality in Ghana, few studies have explored the maternal experience of infant loss and the perinatal grieving process. As part of a larger study that interviewed 153 mothers with a sick infant, this 1-year follow-up study rein…
'Total Pain' in Children with Severe Neurological Impairment
Many children with palliative care needs experience difficulty in managing pain. Perhaps none more so than those with severe neurological impairment. For many years; behaviours in these children were misunderstood. As a result; pain was poorly recognised and i…
Towards a public health approach for palliative care: an action-research study focused on engaging a local community and educating teenagers
BACKGROUND: Education sessions about palliative care among teenagers are uncommon in developed countries. However, very little is known either about the impact of this type of intervention or about how this age-group perceives its impact. The purpose of this s…
Trends in the aggressiveness of pediatric cancer near the end-of-life
Backgrounds: Many adult patients with cancer who knowthey are dying choose less intense care. High intensity careis associated with worse caregiver outcomes. Little is knownabout intensity of treatment of end-of-life care in children withcancer in Japan.
Turning Water into Wine: A New Community Pharmacy Workforce Delivering Paediatric Palliative Care Services Across Scotland
Background: A ground breaking paediatric palliative care study in Scotland in 2015 identified that 15,400 babies, children and young people (BCYP) with life-limiting conditions required input from palliative care services, significantly higher than previously …
Understanding the bereavement experience of grandparents following the death of a grandchild from a life-limiting condition: a meta-ethnography
AIM: To increase understanding of grandparental grief following the death of a grandchild from a life-limiting condition. DESIGN: META-ETHNOGRAPHY: DATA SOURCES: Academic Search Complete (2015, updated 2018), CINHAL, Embase, psycINFO, PubMed and Web of Science…
Unexpected Survivors: Children With Life-Limiting Conditions of Uncertain Prognosis
OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children w…
Use of an Electronic Journal Club to Increase Access to and Acceptance of Palliative Care Literature across General Pediatricians and Pediatric Subspecialties
CONTEXT: Implementation of pediatric palliative care as a primary practice relevant for all pediatricians and pediatric subspecialists requires a grounding, shared knowledge. This study reports on the innovative application of a monthly Palliative Care E-Journ…
Use of electronic media in a pediatric palliative aquatics program: Legacy, teaching, research and caveats
Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in a pediatri…
Use of Facebook in the maternal grief process: An exploratory qualitative study
This study seeks to explore the potential implications of Facebook use in the process of maternal grief. The participants were 11 women who had lost their children due to accidents or prolonged illness. Semistructured interviews were conducted and subjected to…
Using entrustable professional activities to assess graduation readiness in pediatric critical care
Learning Objectives: Assessing competence in pediatric critical care medicine (PCCM) training is challenging, and Entrustable Professional Activities (EPAs) were recently introduced to enhance the assessment process. There are 7 EPAs that define the tasks expe…
Using the Young Children’s Participation and Environment Measure (YC-PEM) to Describe Young Children’s Participation and Relationship to Disability and Complexity
Minimal research exists on the participation of young children who are five years and younger. The purpose of this study is to describe the participation of young children who use a large children’s treatment centre in Ontario, Canada in relation to primary di…
'we didn’t tell everybody because everybody didn’t need to know': An examination of parental disability-disclosure of spina bifida
This qualitative study sheds light on the process that parents go through as they learn of a spina bifida diagnosis and the communication strategies that are used to discuss an expected disability diagnosis with others. Interviews with 30 participants discover…
Well-Child Visits of Medicaid-Insured Children with Medical Complexity
OBJECTIVE: Well-child visits (WCVs) help optimize children's health. We measured annual WCVs for children with medical complexity (CMC) and correlated WCVs with hospitalizations.
STUDY DESIGN: This was a retrospective analysis of 93 121 CMC aged 1-18 years co…
What constitutes meaningful engagement for patients and families as partners on research teams?
ObjectiveThere is growing emphasis on health care organizations to ensure that lay people are meaningfully engaged as partners on research teams. Our aim was to explore the perspectives of patients, family members and informal caregivers who have been involved…
What I really need right now is to hear from other parents with a child like mine
Objectives * Describe two benefits of a web-based educational tool for parents of children with serious illness and clinicians who care for them. * List three common themes explaining what is most important to parents of seriously ill children in coping with t…
When a child becomes terminal: Discrepant adolescent and parent perspectives on discussing a terminal prognosis with adolescents with cardiomyopathy, heart failure, and heart transplant
Introduction: Adolescents with cardiomyopathy, heart failure, and heart transplant (CMHF/HTx) are at risk of life-changing complications and premature death. The importance of advance care planning (ACP) in pediatric patients with HIV and cancer has been demon…
When a Child Dies in the PICU Despite Ongoing Life Support
OBJECTIVES: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals. DATA SOURCES: Multidisciplinary author group, international expert opinion, and use of current literature. DATA SYNTHESIS: We describe thr…
When and Why Do Neonatal and Pediatric Critical Care Physicians Consult Palliative Care?
BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there r…