Browse Items · Pediatric Palliative Care Library

A 15-year experience in pediatric palliative care: a retrospective hospital-based study

BACKGROUND: The current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community…

Defining and quantifying population-level need for children's palliative care: findings from a rapid scoping review

BACKGROUND: The number of children who require palliative care has been estimated to be as high as 21 million globally. Delivering effective children's palliative care (CPC) services requires accurate population-level information on current and…

Serious health-related suffering experienced by children with disability and their families living in Bangladesh: A scoping review

BACKGROUND: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would…

Tags: 2023, 2023 SE5 - Low Resource Setting, Bangladesh, Child, Chowdhury MK, Disabled Children, Doherty M, Hospice Care, Hospices, Humans, Morgan DD, Only Child, Palliative Care/mt [methods], Palliative Medicine, Smith SE

Challenges in establishing optimal pediatric palliative care at the university hospital in Slovenia

Abstract The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early…

End-of-life care in the pediatric intensive care unit: Survey in Japan

BACKGROUND: End-of-life (EOL) care is an important topic in critical care medicine, but EOL discussions with families can be difficult and stressful for intensivists. The aim of this study was to clarify the current practices and barriers facing…

Existential experience of children with cancer under palliative care

OBJECTIVE: To understand the existential experience of children with cancer under Palliative Care from the Humanistic Nursing Theory's point of view. METHOD: This is a field and qualitative research, in which eleven children participated, supported…

Parental assessment of comfort in newborns affected by life-limiting conditions treated by a standardized neonatal comfort care program

OBJECTIVE: To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program. STUDY DESIGN: Participants were parents (n=35…

Who are the children using hospice care?

PURPOSE: The purpose was to examine the characteristics of children who use hospice care. DESIGN AND METHODS: Using the Andersen Model of Health Services Use, California Medicaid administrative databases were analyzed to describe the characteristics…

Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands

BACKGROUND: Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child…

Tags: 2015, April 2019 List, BMC Palliative Care, Caregivers, Consensus, Dutch Paediatric Palliative Care Guideline Group for Symptoms, Health Planning Guidelines, Humans, Knops RR, Kremer L C, Netherlands, Palliative Care/mt [methods], Palliative Care/st [standards], Pediatrics/mt [methods], Pediatrics/st [standards], Verhagen AA

Identifying domains of quality of life in children with cancer undergoing palliative care: A qualitative study with professionals

OBJECTIVE: The goal of pediatric palliative care (PPC) is to maintain the quality of life (QoL) of children whose lives are threatened. However, there are sparse scientific data on the domains of QoL in this particular context, and no measurement…

The journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK

INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their…

Maintaining Integrity: How Nurses Navigate Boundaries in Pediatric Palliative Care

PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses…

The effects of the Palliative Medicine Consultation on the DNR status of African Americans in a safety-net hospital.

OBJECTIVE: To examine the effectiveness of palliative medicine consultation on completion of advance directives/do-not-resuscitate (DNR) orders by racial/ethnic minorities., METHOD: A sample of 1999 seriously ill African American and Hispanic…

Palliative care in neonatal neurology: robust support for infants, families and clinicians

Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care…

Impact of an inpatient palliative care team: a randomized control trial.

BACKGROUND: Palliative care improves care and reduces costs for hospitalized patients with life-limiting illnesses. There have been no multicenter randomized trials examining impact on patient satisfaction, clinical outcomes, and subsequent health…

Tags: 2008, Advance Directives/sn [Statistics & Numerical Data], Advance Directives/statistics & Numerical Data, Aged, Backlog, Beane J, Blum M, Conner D, Cooperative Behavior, Critical Illness/ep [Epidemiology], Critical Illness/epidemiology, Critical Illness/psychology, Critical Illness/px [psychology], Critical Illness/rehabilitation, Critical Illness/rh [Rehabilitation], Della PR, DNAR, DNAR Outcomes, Gade G, Hospice Care/ut [Utilization], Hospice Care/utilization, Hospitalization, Hospitalization/statistics & numerical data, Humans, Journal Article, Journal of Palliative Medicine, Liberson M, McGrady K, Palliative Care/methods, Palliative Care/mt [methods], Patient Care Team, Patient Satisfaction, Prospective Studies, Quality Of Life/psychology, Quality Of Life/px [psychology], Richardson RH, Survival Rate, Venohr I, Williams MP

Easing of suffering in children with cancer at the end of life: is care changing?.

PURPOSE: In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought…

The reflections you get': an exploration of body image and cachexia.

BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people…

Physician-older patient communication at the end of life.

Communication with dying patients and their families requires special skills to assist them in this extremely stressful period. This article begins with a case that illustrates many of the challenges of communicating with the dying. It then reviews…

Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy.

OBJECTIVE: To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT)., PATIENTS AND METHODS:…

A pilot study of palliative medicine fellows' hospice home visits.

This was a prospective descriptive study of hospice physician home visits (HVs) conducted by Hospice and Palliative Medicine Fellows. Our objectives were 1) to improve our knowledge of hospice care at home by describing physician HVs 2) to identify…

Metronomics during palliative care in paediatric oncology? For sure! But handle me with care

Tags: 2016, Acta Paediatrica, Administration, Andre N, Child, Humans, Metronomic, Neoplasms/dt [drug Therapy], Oncology 2017 List, Palliative Care/mt [methods], Pasquier E

Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study

CONTEXT: Pediatric palliative care randomized controlled trials (PPC-RCTs) are uncommon. OBJECTIVES: To evaluate the feasibility of conducting a PPC-RCT in pediatric cancer patients. METHODS: This was a cohort study embedded in the Pediatric Quality…

[Difficulties in communication with parents of pediatric cancer patients during the transition to palliative care]

INTRODUCTION: Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. AIM: To investigate the timing and manner of communication with parents concerning the introduction…

Tags: 2017, Discenza D, Emotional Intelligence, Humans, Infant Newborn, Intensive Care Units Neonatal/og [organization & Administration], Neonatal Network - Journal of Neonatal Nursing, Palliative Care, Palliative Care/mt [methods], Palliative Care/px [psychology], Parents, Parents/ed [education], Parents/px [psychology], September 2017 List, Social Support

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