This site uses Google Analytics to track site traffic and other metrics. If you would like to allow the use of Google Analytics please click Opt In below. This will associate a cookie with your browser.
Background/aim: Pediatric Palliative Care (PPC) in hospitals mainly focuses on the parents and siblings of children suffering from a life limiting disease. However, most grandparents are also highly involved in the caring of the child and require…
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…
Background More young adults with life-limiting conditions are surviving into adulthood needing adult palliative care (Gibson- Smith, Jarvis, Norman et al., 2021). The evidence on appropriate service models is sparse (Clark & Fasciano, 2015. Am J…
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…
Background/Objectives: As cancer care has improved, so has the understanding that children with cancer are at risk for psychological distress. The American Academy of Pediatrics has highlighted the importance of addressing these concerns. Our study…
Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated.…
Background/Objectives: Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families' needs during curative and palliative home care. The aim of this study was to…
Outcomes: 1. Utilizing single-case design and graphical analytic approaches, participants will self-report the ability to investigate prospective small-sample trends in anxiety symptom trajectories, individual variation over time, and clinically…
Background Paediatric palliative care (PPC) focuses on the enhancement of quality of life for children with life-limiting diseases and support to their families. This study reviewed the paediatric palliative care program in Hong Kong (HK). Objectives…
Background: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief…
Aims & Objectives: To develop three linked projects to enumerate, reflect upon and identify ways to improve the experience of children with life limiting conditions (LLC) admitted to PICU without previous contact with palliative care services or…
Objectives: 1. Describe patterns of pediatric palliative care and care disparities in neonatal intensive care unit (NICU) patients and families hospitalized in the Deep South (Alabama, Louisiana, and Mississippi). 2. Describe implications for…
Objectives To identify gaps in SPPC provision at a patient and service level at the tertiary centre, local children's hospice and the region, compared to national frameworks and standards. Specialist paediatric palliative care (SPPC) aims to improve…
Objective To describe the development and implementation of a 1-year 'Hybrid' Pediatric Palliative Care (PPC) Fellowship, which includes both clinical and online learning to train paediatricians as specialists and leaders in paediatric palliative…
Background/Objectives: Palliative care for Pediatric cancer patients and their families includes the relief of symptom and improvement of quality of life at any and all stages of disease. There care are most effectively provided by an…
Purpose According to the most recently published data from National Hospice and Palliative Care Organization, approximately 78% of hospice providers in the United States serve pediatric patients, and the majority of these serve 1-10 patients per…
Background and Aims: WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family, the aim of this study is to describe the endof-life care of children with…
Aims & Objectives: Preference for care in dying children is important for the quality of end-of-life care but little is known about attitudes of the relatives of the children toward the preference according to the expected life span. Methods We…
Background/aims: Undertaking research with children and young people (CYP) with life-limiting conditions (LLC) and life threatening illnesses (LTI) is challenging. Previous research has highlighted barriers, such as obtaining ethics approval and…
Background and Aims: Transition to palliative care (PC) is a critical aspect of pediatric oncology requiring a high level of communication skills from doctors, which could be best judged by parents of children died in cancer. Our aim was to explore…
Aims & Objectives: Providing family focussed care through lessons learned from bereavement follow-up. Methods RMCH is a tertiary PICU in UK with 750 admissions annually. Families of all patients who die in PICU are offered bereavement follow-up at…
Outcomes: 1. Participants will be able to identify the impact current bereavement resources have on patients and families treated at our free-standing children's hospital. 2. Participants will be able to identify periods during bereavement where…
INTRODUCTION: Nationally, over 45,000 children die each year with nearly 75% of those dying in hospitals and 80% of hospital deaths occurring in the Pediatric Intensive Care Unit (PICU). CHRISTUS Children's is among an estimated 20% of children's…
Description: Background: Pediatric palliative care is an interdisciplinary service that works to enhance the quality of life for children with serious illness. Unfortunately, the need for palliative care is difficult to ascertain and is often…
In this volume of The Journal, two retrospective cohort studies, both based in Ohio, provide insightful data about the deployment of dedicated pediatric palliative care teams. While home-based visits have been a longtime core principle of pediatric…
Background/Objectives: Bereaved parents during palliative care affects the quality of life of children and family. This research aims to explore parents' experiences caring children with cancer in palliative condition. Design/Methods: The research…
Metachromatic leukodystrophy (MLD) is a rare autosomal recessive lysosomal disorder caused by a deficiency of the enzyme arylsulfatase A (ARSA). Symptoms include motor decline, developmental regression, decreased intellectual capabilities, and…
Aims & Objectives: Caring for dying children is complex and requires coordination of all resources. In PICU the main objective is to save lives and ensure vital functions in critically ill children. However due to the child's critical and life…
Background/aims: To successfully integrate a newly developed measure into clinical practice, the challenges and incentives for implementation must be understood, and these are specific to each measure. Previous research has focused on…
Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with…
Background: Inpatient hospice care (IHC) for adults in Germany is used in the last weeks of life. Children, adolescents and young adults (ACA) with life-limiting diseases are entitled to 28 days/year of IHC during their lifetime. We explored various…
Objectives: Research has shown that advance care planning concepts for adults need to be revised and adapted to be applicable to pediatric situations. A consistent approach to pediatric advance care planning (pACP) is still missing. The study aimed…
Background Research ethics committees (RECs) are identified as one of the biggest barriers to research with vulnerable populations, such as children and young people with life-limiting conditions or life-threatening illnesses (CYP with LLC/LTI).…
Introduction: Advancement in medical science and better health care has led to increased survival of children with complex neurodisability (cerebral palsy, neuromuscular, neuro-metabolic, and genetic disorders). Paediatric palliative care has…
Aims & Objectives: To identify patients admitted to PICU who might benefit from palliative care using the Spectrum of Children's Palliative Care Needs. Methods Prospective study between July 2016-December2017. Cases admitted to the PICU were assessed…
Background: Perinatal Hospice is a relatively new component of pediatric palliative care, which supports families who are expecting the birth of a child with life-threatening or life-limiting condition. Parents in this situation have unique needs and…
Outcomes: 1. Attendees will be able to identify the methods used to abstract and characterize pain from the electronic health record of children and adolescents with cancer receiving palliative care services. 2. Attendees will be able to describe the…
Program Goals Pediatric residentscare for a wide spectrum of children with acute and chronic disease processes. They are often the first to communicate with families, yet receive little formal training in conveying difficult information. In 2014,…
Purpose: Compassion fatigue (CF) is emotional distress experienced by providers from ongoing contact with patients' suffering. Burnout (BO) is personal distress due to uncontrollable workplace factors that manifest in career dissatisfaction. CF and…
Objectives: *Discuss bereaved parent and staff perspectives regarding limitations for end-of-life care for children who die in intensive care units.*Explain the process of co-creation sessions, and identify opportunity concepts for improving end of…
