Browse Items · Pediatric Palliative Care Library

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…

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

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…

A Pilot Study Of The Effectiveness Of Home Teleconsultations In Paediatric Palliative Care

We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families…

Parent Perspectives of Neonatal Intensive Care at the End-of-Life

This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the…

Palliative Care In The Nicu And Why Education Matters

Palliative care in the NICU gets a bad rap to the point where it is not even clearly described to families. There is a strong need for education and dispelling the myths that surround this very important type of support.

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

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…

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…

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…

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

Pediatrician Ambiguity In Understanding Palliative Sedation At The End Of Life

CONTEXT: Palliative sedation is a means of relieving intractable symptoms at the end of life, however, guidelines about its use lack consistency. In addition, ethical concerns persist around the practice. There are reports of palliative sedation in…

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…

Palliative Medicines For Children - A New Frontier In Paediatric Research

OBJECTIVES: This paper seeks to highlight from a UK perspective the current lack of a research evidence base in paediatric palliative care that has resulted in a paucity of available medicines with appropriate formulations (strength and dosage form)…

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

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…

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…

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…

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…

[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…

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…

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…

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…

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…

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

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:…

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…

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