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 1126–1150 of 4332 publications
Single Center Utilization of Prenatal Palliative Care in Patients with Critical Congenital Heart Disease: Missed Opportunities?
Background: Congenital heart disease CHD is a common congenital anomaly with lesions requiring intervention before initial hospital discharge defined as critical CHD CCHD. Advances in prenatal detection, surgical, and post-operative care have improved early su…
Social work practice in perinatal palliative care: an overview
Social workers in Perinatal Palliative Care (PPC) play an essential role in caring for birthing people carrying a baby with a life-limiting condition and their families. Perinatal palliative care is consistent with social work values concerning fostering quali…
"Somebody Hug the Interpreter": Enhancing Pediatric Palliative Care Partnership with Medical Interpreters
Outcomes: 1. Utilizing a case-based approach, participants will be able to describe the unique roles embodied by in-person medical interpreters in the context of pediatric serious illness and summarize the personal, patient/encounter-level, and hospital-level …
Spiritual Care in PICUs: A U.S. Survey of 245 Training Fellows 2020-2021*
OBJECTIVES:
To understand the perspectives of pediatric fellows training in critical care subspecialties about providing spiritual care.
DESIGN:
Cross-sectional survey of United States National Residency Matching Program pediatric fellows training in critical…
Storytelling to support legacy making for bereaved parents of children with cancer
Honoring a child's legacy is an essential aspect of meaning-making for bereaved parents, yet little is known about storytelling as a mechanism. Through narrative analysis of 19 bereaved parent interviews focused on legacy, we examined the role of storytelling …
Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit
Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences.
Objective(s): To examine sources of and changes in stress among parents of chil…
Structured Framework for Multidisciplinary Parent Counseling and Medical Interventions for Fetuses and Infants with Trisomy 13 or Trisomy 18
Objective: Trisomy 13 (T13) and 18 (T18) are aneuploidies associated with multiple structural congenital anomalies and high rates of fetal demise and neonatal mortality. Historically, patients with either one of these diagnoses have been treated similarly with…
Suffering in children and adolescents in paediatric palliative care in Spain: Psychometric properties of the qESNA scale
Objective: To analyze the psychometric properties of the qESNA scale and its usefulness to assess the suffering of paediatric patients with life-limiting and/or life-threatening diseases (children with LLTC) in clinical practice.
Method(s): Cross-sectional and…
Supported Privacy: An Essential Principle for End-of-Life Care for Children and Families in the PICU
Caring for children and their families at the end-of-life is an essential but challenging aspect of care in the PICU. During and following a child's death, families often report a simultaneous need for protected privacy and ongoing supportive presence from sta…
Support Experiences and Wishes of Bereaved Parents After the Loss of Their Child to Cancer
Introduction: The death of a child has a tremendous impact on parents' lives. The experience of parents who have lost a child to cancer may differ from other bereavement experiences, including other childhood and adulthood causes of death, because of the uncer…
Supporting parent capacity to manage pain in young children with cancer at home: Co-design and usability testing of the PainCaRe app
Young children receiving outpatient cancer care are vulnerable to undermanaged pain. App-based solutions that provide pain treatment advice to parents in real-time and in all environments may improve access to quality pain care. We used a parent co-design appr…
Supporting parents while their child is receiving neurocritical care
The post-intensive care syndrome (PICS) concept whereby the ICU experience of the patient as well as their family can have long-term deleterious health outcomes in both the patient and the family provides a rationale and impetus for modifying the ICU experienc…
Symptom Trajectories and Mortality Among Children Receiving Palliative Care: A Prospective Cohort Study
Outcomes: 1. Describe two major patterns of symptom trajectories over time among children receiving palliative care services. 2. Identify three clinical and research implications of the two major symptom trajectory patterns observed in pediatric palliative car…
The Alluring, Enduring, and Troubling Concept of a "Good Death" in Pediatric Palliative Care
Outcomes: 1. Using a critical historical approach, participants will evaluate why, how, and for/with who the "good death" concept emerged and how it has persisted over time. 2. The interprofessional authorship team will illustrate and deconstruct the "good dea…
THE DEVELOPMENT OF A CHILDREN'S HOSPICE PERINATAL SERVICE TO IMPROVE PERINATAL PALLIATIVE CARE - 10 YEARS ON
Objectives Perinatal palliative care is an evolving specialty committed to providing care for fetuses and babies with a life limiting condition diagnosed in the antenatal or neonatal period. It also includes supporting the parents and extended family. Initiall…
The effect of musical-animated toys and audiobooks on fear and pain in the tracheostomy care of children in the palliative care
Abstract
Objective: The study aimed to evaluate the effects of musical-animated toys and audiobooks on the fear and pain in the tracheostomy care of children in the palliative care clinic.
Methods: The study design was a single-center, single-arm, crossover-c…
The Effect of Neonatal Intensive Care Nurses' Attitudes Towards Palliative Care on Death Anxiety and Burnout: An Analytic Cross-Sectional Study
This study aimed to determined the effect of neonatal intensive care nurses' attitudes towards palliative care on death anxiety and burnout. This was an analytic cross-sectional study conducted with 215 neonatal intensive care nurses working a children's hospi…
The Effect on the Care Behaviors of Nurses Working in Intensive Care Clinics of Moral Distress Experienced During End of Life Patient Care
This research was conducted as a descriptive study in order to examine the effects of the moral problems experienced by nurses working in intensive care clinics on their end of life care behaviors. The data were collected using the Moral Distress Scale and Car…
The elements of end-of-life care provision in paediatric intensive care units: a systematic integrative review
Background: Deaths in paediatric intensive care units (PICUs) are not uncommon. End-of-life care in PICUs is generally considered more challenging than other settings since it is framed within a context where care is focused on curative or life-sustaining trea…
The experiences of grandparents involved in the home-based end-of-life care of their grandchild with cancer: A qualitative secondary data analysis
While grandparents are often a valuable resource in home-based pediatric end-of-life care, they may also experience psychological consequences when faced with their grandchild's illness and death. In this qualitative study, we performed semi-structured intervi…
The Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of psychometric properties
Context: Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the provision and qua…
The Impact of Qualification and Hospice Education on Staff Attitudes during Palliative Care in Pediatric Oncology Wards-A National Survey
Background: Our knowledge about the attitudes of healthcare staff to palliative care in pediatric oncology is scarce. We aimed to assess their perceptions of palliative care in Hungary and find answers to the question of how to provide good palliative care for…
The impact of specialized pediatric palliative care on advance care planning and healthcare utilization in children and young adults: a retrospective analysis of medical records of in-hospital deaths
Background: Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of specialized palliative care (SPC) on advanc…
The impact, perceptions and needs of parents of children with epidermolysis bullosa
Background: Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a child with…