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 3476–3500 of 4332 publications
When Is It in a Child's Best Interests to Withhold or Withdraw Life-sustaining Treatment? An Evolving Australian Jurisprudence
Decisions about whether to withdraw or withhold life-sustaining medical treatment from children give rise to complex and value-laden judgments. While recourse to the courts is uncommon, judicial decisions provide an important source of guidance for the childre…
When paediatricians and families can't agree
Recent high-profile cases have highlighted the difficulties that professionals caring for terminally ill or technology dependent children face.
I am a paediatrician. I see children with severe problems, often chronic and frequently without a cure, and I try a…
Why Are There So Few Ethics Consults in Children's Hospitals?
In most children's hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that many of the…
Why Do Neonatologists in Scandinavian Countries and the Netherlands Make Life-and-death Decisions So Different?
An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are identified …
Wishing well, a home-based Pediatric palliative care service for childhood cancer in thailand
Background/Objectives: Thailand is an upper middle income country in Southeast Asia, with universal health care, including Pediatric cancer treatment. While many children with cancer are curable, some are less fortunate. For children with limited hope for cure…
Withdrawal of life-sustaining therapy
PURPOSE OF REVIEW: The aim of this review is to examine literature relating to the withdrawal of life-sustaining therapy (WLST). RECENT FINDINGS: Discussions regarding end-of-life issues in adults and children are not occurring comprehensively. Discussions rel…
Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible neonates at…
Wrapped with love-art therapy in paediatric palliative care
Introduction To discuss the extended family support that is required in children's palliative care, focusing on Grandparents, who sometimes may be seen as the 'forgotten mourners'. Objectives Utilizing art psychotherapy in a group setting to encourage peer sup…
Youth With Chronic Conditions and Risky Behaviors: An Indirect Path
Purpose: To compare risk behaviors between youths living with a chronic condition (CC) and their healthy peers, controlling for condition severity. Methods: Data were drawn from the baseline wave of the GenerationFRee study (students aged 15-24 years in postma…
Access and Barriers to Utilization of Palliative Care in Pediatric Pulmonary Hypertension
Background: Pulmonary arterial hypertension (PAH) is a terminal disease that can be diagnosed in children and adults. Adverse effects of treatment combined with a terminal illness can lead to a plethora of unmet patient needs that can be addressed by palliativ…
A demanding act of love: Barriers and challenges in communication and decision-making for infants at the limits of viability
Introduction: The birth of an extreme preterm infant often comes unexpectedly. Decisions, then, must often be made quickly and under circumstances that can be emotionally stressful for parents or morally burdensome for health care professionals. In the past de…
Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis
End of life care policy in the UK advocates open discussions between health professionals and patients as the end of life approaches. Despite well documented understanding of the progression of life-limiting neuromuscular diseases, the majority of patients aff…
Advance Care Planning Discussions with Adolescent and Young Adult Cancer Patients Admitted to a Community Palliative Care Service: A Retrospective Case-Note Audit
PURPOSE: Adolescents and young adults (AYA) with cancer are a cohort requiring specialized healthcare models to address unique cognitive and physical challenges. Advance care planning (ACP) discussions likely warrant age-appropriate adaptation, yet, there is l…
Advance care planning for adolescent patients with life-threatening neurological conditions: A survey of Japanese paediatric neurologists
Objective To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists. Design Cross-sectional study. A self-reported questionnaire was administered to assess the pra…
Advance care planning: outpatient antenatal palliative care consultation
Kukora and colleagues report on their single centre study of antenatal palliative care consultation (APCC) and reveal that this practice—though applied in a limited number of cases—contributed to a greater use of postnatal palliative/comfort care regimens. Add…
Affording opportunities to discuss deterioration in paediatric palliative care consultations: a conversation analytic study
OBJECTIVE: Discussing the potential deterioration of a child who has a life-limiting condition has recognised benefits for future care, but can be challenging in a clinical context where uncertain illness trajectories are common. Existing research is restricte…
Aggressiveness of care at the end of life in children with cancer: A nationwide cohort study
Background: Cancer remains the leading medical cause of death in children. Ensuring quality of life should be a priority, but it may be difficult to stop treatments, particularly in settings where palliative care is scarce. Little is known about how many child…
A good resource for parents, but will clinicians use it?: Evaluation of a resource for paediatric end-of-life decision making
BACKGROUND: Communication with parents about end-of-life care and decisions is a difficult and sensitive process. The objective of the present study was to ascertain clinicians' views on the acceptability and usefulness of a handbook and web-based resource (Ca…
Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study
In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of t…
A Multimodal Mindfulness Training to Address Mental Health Symptoms in Providers Who Care for and Interact With Children in Relation to End-of-Life Care
AIM: Medical providers may face unique emotional challenges when confronted with the suffering of chronically ill, dying, and bereaved children. This study assessed the preliminary outcomes of participation in a group-based multimodal mindfulness training pilo…
Analysis of death and palliative care in a neonatal intensive care unit
Objective: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected to it. Met…