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 1151–1175 of 4332 publications
The knowledge, attitude and behavior on the palliative care among neonatal nurses: what can we do
Background: Neonatal nurses should provide timely and high-quality palliative care whenever necessary. It's necessary to investigate the knowledge, attitude and behavior of palliative care among neonatal nurses, to provide references and evidences for clinical…
The Lived Experiences of Hospice Healthcare Workers Caring for Adolescents and Young Adults With Advanced Cancer: An Interpretative Phenomenological Analysis
Objective: To understand the lived experience of healthcare workers who provide palliative care to adolescents and young adults living with advanced cancer. Methods: Interpretative phenomenological analysis was the design of this study. Hospice healthcare work…
THEMATIC ANALYSIS OF THE EXPERIENCES OF HOME HOSPICE PROFESSIONALS WHEN COMMUNICATING WITH YOUNG CHILDREN OF TERMINALLY ILL PATIENTS
Background Assisting young children when a parent faces a life-limiting illness presents significant challenges. Healthcare professionals play a crucial role in engaging them, and yet the impact of such interactions on the professionals themselves and their pe…
The most painful estrangement: Death at birth
More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense, social sup…
The multidimensional grief of siblings: An exploration of story enactment in children’s hospices
In this article the author reflects on her experience of facilitating story enactment within an arts therapies group for bereaved siblings at Shooting Star Children’s Hospices, in London. The author is originally trained in the Sesame Approach and has practise…
The needs of healthcare personnel who provide home-based pediatric palliative care: a mixed method systematic review
Background: Families with children who have life-limiting or life-threatening illnesses often prefer to receive care at home to maintain a sense of normalcy. However, caring for children at home is different from caring for them in a hospital, and we do not kn…
The Practical Application of the Individual Care Plan for Pediatric Palliative Care: A Mixed-Method Study
Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in daily practi…
The Psychiatric Care of Children and Young Adults With Neurodegenerative Diseases
Pediatric neurodegenerative disorders (PNDs), such as juvenile neuronal ceroid lipofuscinosis (CLN3 disease, also called Batten disease) and juvenile Huntington disease, are devastating conditions that result in progressive neurological dysfunction and profoun…
The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care
In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are underexplored…
The purpose of an individual care plan in pediatric palliative care according to healthcare professionals: a qualitative study
Background: To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual Care Plan (…
The quality of nursing care in dying children from the nurses' point of view in Iran: A cross-sectional study
Background: Nowadays, the quality of nursing care is one of the most essential factors in health services and patient care. The quality of end-of-life care is of high importance, especially in vulnerable groups such as children. In the final stages of life, th…
The ROAR Score: Quantifying Risk of Acute Return to the Hospital in Pediatric Hospice Patients
Outcomes: 1. Implement a scoring system to facilitate clear and concise communication of goals of care between palliative care teams, hospice staff, and families. 2. Understand the benefits of a scoring system for hospice staff to mitigate family distress and …
The role of 'familiarity' and 'normality' in supporting transition to end of life care in paediatric oncology: A qualitative study
Aim: The aim of this study was to explore factors that helped when a child with cancer transitioned to end of life care in a hospital setting.
Design: Qualitative exploratory design using reflexive thematic analysis.
Methods: In-depth, semi-structured intervie…
The Role of Midwives in US Perinatal Palliative Care: A Scoping Review
Abstract
Introduction: Perinatal palliative care (PPC) is a rapidly growing and essential reproductive health care option for pregnant persons with a diagnosed life-limiting fetal condition who continue their pregnancy. The provision of PPC is within the scope…
The Special Delivery Unit: A Novel Concept for Mother-Baby Continuity for Major Fetal Abnormalities
Objective: This article describes the experience in the planning and development of a special delivery unit (SDU) at our free-standing children's hospital in Austin, Texas.
Study design: Description of various aspects of the development of the SDU. In additio…
The Spiritual Dimension of Parents' Experiences Caring for a Seriously Ill Child: An Interview Study
BACKGROUND: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these parents are co…
The Use of Cannabinoids in Pediatric Palliative Care-A Retrospective Single-Center Analysis
Abstract
This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized outpatien…
THE WEST MIDLANDS PERINATAL PALLIATIVE CARE SERVICE AUDIT ON REFERRALS, DIAGNOSES AND PROGNOSES OF BABIES WITH SEVERE CONDITIONS
Objectives The West Midlands Perinatal Palliative Care Service based at Birmingham Women's and Children's NHS Hospital Trust is one of the busiest services in the UK after being in operation only 2 years. The service offers support to all West Midlands hospita…
Timing of Palliative Care Consultation and End-of-Life Care Intensity in Pediatric Patients With Advanced Heart Disease: Single-Center, Retrospective Cohort Study, 2014-2022
Objectives: Pediatric patients with advanced heart disease (AHD) often receive high intensity medical care at the end of life (EOL). In this study, we aimed to determine whether receipt and timing of pediatric palliative care (PPC) consultation was associated …
Tools used to measure the impact of comorbidities on surgical outcomes in children with complex chronic conditions: A scoping review
AIM: To identify and describe assessment tools used to measure the impact of comorbidities on postoperative outcomes in children with complex chronic conditions (CCC). METHOD: This was a scoping review using five electronic databases. The search was conducted …
Training perinatal nurses in palliative communication by using scenario-based simulation: A quasi-experimental study
Aim: This study aimed to assess the impact of two educational modules on enhancing the communication confidence, competence and performance of perinatal nurses in the context of palliative care.
Background: Concerns have arisen regarding the preparedness of p…
Trajectories in Intensity of Medical Interventions at the End of Life: Clustering Analysis in a Pediatric, Single-Center Retrospective Cohort, 2013-2021
Objective: Pediatric deaths often occur within hospitals and involve balancing aggressive treatment with minimization of suffering. This study first investigated associations between clinical/demographic features and the level of intensity of various therapies…
Translation and cultural adaptation of the Italian version of the Paediatric Palliative Screening Scale
The number of children eligible for Paediatric Palliative Care has dramatically increased over the years, with few tools that can help with early identification. The Paediatric Palliative Screening Scale is a dedicated German, English, and Portuguese screening…
Truth-telling to the seriously ill child—Nurses’ experiences, attitudes, and beliefs
Background: Nurses play an integral role in the care of children hospitalised with a serious illness. Although information about diagnostics, treatments, and prognosis are generally conveyed to parents and caregivers of seriously ill children by physicians, nu…
Understanding and Optimizing Rest and Rejuvenation for Family Caregivers of Children with Medical Complexity
Outcomes: 1. Participants will be able to define and summarize the major themes characterizing CMC family caregivers' experiences of rest, rejuvenation, and respite and then illustrate examples of those themes from family caregivers' stories. 2. Participants w…