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 3276–3300 of 4332 publications
Incorporating bereaved parents as facilitators and educators in teaching principles of palliative and end-of-life care
Objectives * Identify innovative ways to incorporate highly trained bereaved parent volunteers into educational opportunities in palliative care for health care providers and staff. * Describe the process of implementation and content of palliative care educat…
Incorporating Bereaved Parents as Faculty Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care.
BACKGROUND: Education and training for interdisciplinary pediatric providers requires training in principles of palliative and end-of-life (EOL) care. The experiences of bereaved parents can inform and enhance palliative care educational curricula in uniquely …
Increasing access to children's palliative care education through e-learning: a review of the ICPCN experience
Education is integral to the development of children's palliative care (CPC) globally; thus, the International Children's Palliative Care Network (ICPCN) developed a training programme including face-to-face and e-learning programmes to increase access to CPC.…
Increasing accurate palliative care consultation in the NICU
Background: NICU length of stay (LOS) data revealed patient outliers with significantly longer LOS and concomitant increased risk of mortality. Baseline data revealed under-utilization of Pediatric Palliative Care (PPC) consultative services in this population…
Indicators Used to Assess the Impact of Specialized Pediatric Palliative Care: A Scoping Review
BACKGROUND: Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they improve outc…
Individualised advance care planning in children with life-limiting conditions
INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to develop a…
Infant deaths from congenital anomalies: novel use of Child Death Overview Panel data
OBJECTIVE: We aimed to assess Child Death Overview Panel (CDOP) data validity, and cause of death classification, by comparison with information from a local birth cohort study (Born in Bradford, BiB), and another cause of death coding system (causes of death …
Influence of Palliative Care on Medical Treatment of Pediatric Patients with Complex Chronic Diseases at Cook Children's Medical Center
Background: Literature in adult palliative care (PC) boasts fewer invasive procedures, shorter lengths of stay, and decreased cost of care. Benefits of pediatric PC are under-researched and are important to identify to optimize care. Objective: Our aim was to …
Influencing the national debate on medical assistance in dying (MAID): Leveraging the canadian paediatric surveillance system (CPSP) to inform the position of the canadian paediatric society (CPS)
Aims In June 2016, Bill C-14 was enacted in the Canadian Parliament, allowing medical assistance in dying (MAID) for consenting adults with 'grievous and irremediable medical conditions' experiencing 'intolerable' suffering whose deaths are 'reasonably foresee…
Information needs of young people with cerebral palsy and their families during the transition to adulthood: a scoping review
The transition to adulthood is a developmental phase which occurs as young people move from adolescence into adulthood. Young people with disabilities, including cerebral palsy (CP), and their families have reported challenges during the transition to adulthoo…
Integrating palliative care into the care of paediatric patients at a referral hospital in ghana
Background/Objectives: Caring for children with life threatening diseases can be difficult and also it could be compounded by insufficient training and competence in symptom management and communication skills by staff members. This affects the quality of care…
International Children's Palliative Care Network: A Global Action Network for Children With Life-Limiting Conditions
The International Children's Palliative Care Network (ICPCN) is a global network of individuals and organizations working together to reach the estimated 21 million children with life-limiting conditions and life-threatening illnesses. The drive to establish t…
Interprofessional palliative care education for pediatric oncology clinicians: an evidence-based practice review
OBJECTIVE: Clinician education and expertise in palliative care varies widely across pediatric oncology programs. The purpose of this evidence-based practice review was to identify interprofessional palliative care education models applicable to pediatric onco…
Interprofessional Team Meetings in the Pediatric Cardiac Intensive Care Unit
Purpose: To evaluate communication behaviors and interprofessional team interactions during family meetings in the pediatric cardiac intensive care unit (CICU) because little is known about how interdisciplinary teams communicate with each other about care pla…
In the Best Interest of the. . .Parents: Norwegian Health Personnel on the Proper Role of Parents in Neonatal Decision-making
OBJECTIVES: The role of parents in life-and-death decision-making for infants born at the border of viability is challenging. Some argue that parents should have the final say in decisions about life-sustaining treatment. Others disagree. In this article, we r…
Intranasal fentanyl for respiratory distress in children and adolescents
Respiratory distress is one of the most common and frightening symptoms of children with life-limiting conditions. Because treatment of the underlying cause is frequently impossible or insufficient, in many children, symptomatic treatment is warranted. The pur…
Introduction of triggers for palliative care consultation improves utilization and satisfaction within a level four NICU
OBJECTIVE: We sought to explore the beliefs regarding palliative care team utilization, as well as increase consultation and awareness of the palliative care team's role in the NICU. STUDY DESIGN: The study design in this Level 4 NICU included observational ti…
Introduction of triggers for palliative care consultation improve utilization and and satisfaction within a level 4 NICU
The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those with medica…
Introduction of triggers for palliative care consultation improve utilization and satisfaction within a level IV NICU
Objectives * Identify three key elements that influence successful implementation of triggers for palliative care consultation within a NICU setting. * Recall the four major trigger domains that qualify for pediatric palliative care consultation within a NICU …
Introduction to a novel social media-based meaning intervention for caregivers of children and adolescents receiving palliative care
Objectives * Establish the need for a caregiver intervention. * Introduce the intervention and its components. * Disseminating findings from the piloting of this intervention. Informal caregiving, or care provided by an unpaid individual to an adult or child w…
Involvement of nurses in end-of-life discussions for severely disabled children
Background: In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD discussions …
Is it a surprise? Shocking sub-optimal medication safety in children with medical complexity
BACKGROUNDThere are increasing numbers of children with medical complexity (CMC) worldwide. CMC make multiple transitions between healthcare settings and providers; frequently receiving multiple medications. While the risk of medication error in children is re…
It's All About Communication: A Mixed-Methods Approach to Collaboration Between Volunteers and Staff in Pediatric Palliative Care
BACKGROUND: Multidisciplinary teamwork is considered central to pediatric palliative care. Although different studies state that volunteers play an essential role in palliative care, little is known about the collaboration between volunteers and staff. AIM: Th…