Browse Items · Pediatric Palliative Care Library

"It Seems Like a Bad Thing": US South Asian Youths' Perspectives About the Use of Hospice Care

BACKGROUND: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use. OBJECTIVE(S): This study explored US…

Center to Advance Palliative Care palliative care consultation service metrics: consensus recommendations

The need to standardize the prospective collection and analysis of data has been a cornerstone of education and technical assistance provided by the Center to Advance Palliative Care (CAPC). Data analysis is vital for strategic planning, quality…

Tags: 2008, Backlog, Biometry, Community Health Centers, Consensus, Demography, Essential Data Set, Humans, Journal Article, Journal of Palliative Medicine, Length Of Stay, Meier DE, Palliative Care, Practice Guidelines As Topic, Referral And Consultation, Spragens LH, Weissman DE, Wisconsin

Changing the Landscape of the Neighborhood: The Expanding Role of the Pediatric Palliative Advanced Practice Registered Nurse

There is a dearth of information on the role of the pediatric palliative advanced practice registered nurse (APRN) reported in the literature, and yet, the role is expanding. Advances in technology and health care are helping children with medical…

Tags: 2024, Adolescent, April List 2024, Article, Bass AK, Child, Consensus, Emergency Care, evidence based practice, Human, Journal of Hospice and Palliative Nursing, Medical Society, neighborhood, Overstreet K, Palliative Therapy, pharmacology, registered nurse, Sartor N, special situation for pharmacovigilance

Consensus guidelines on analgesia and sedation in dying intensive care unit patients

BACKGROUND: Intensivists must provide enough analgesia and sedation to ensure dying patients receive good palliative care. However, if it is perceived that too much is given, they risk prosecution for committing euthanasia. The goal of this study is…

Consulting the oracle: ten lessons from using the Delphi technique in nursing research

AIM: The aim of this paper was to provide insight into the Delphi technique by outlining our personal experiences during its use over a 10-year period in a variety of applications. BACKGROUND: As a means of achieving consensus on an issue, the Delphi…

Tags: 2006, Adolescent Transitions, Backlog, Consensus, Delphi Technique, Hasson F, Humans, Journal Article, Journal Of Advanced Nursing, Keeney S, McKenna H, Nursing Research/methods, Reproducibility of Results, Research Design

Decisions about life-sustaining treatment. Impact of physicians' behaviors on the family

BACKGROUND: Despite the growing availability of advance directives, most patients in the intensive care unit lack written directives, and, therefore, consultation with families about treatment decisions remains the rule. In the context of decision…

End-of-Life Care: Consensus Statement by Indian Academy of Pediatrics

Guidance on forgoing life-sustaining medical treatment

Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the…

Tags: 2017, Apparent Life Threatening Event/th [therapy], Article, Awareness, Boss RD, Caregiver, Carter BS, Child Abuse, Child Care, Christian CW, Clinical Decision Making, Comatose Patient, Consensus, Consultation, Critical Illness/th [therapy], Davies D, Death, Death By Neurologic Criteria, Dell ML, Developmental Disorder/th [therapy], Diekema DS, Disease Burden, Disease Course, Elster N, Ethical Decision Making, Extremely Low Gestational Age, Family Decision Making, Family Stress, Feudtner C, Flaherty EG, Fortson BL, Foster Care, Gavril AR, Gestational Age, Goal Attainment, Guinn-Jones M, Hauer JM, Health Belief, High Risk Population, Human, Humphrey LM, Hurley TP, Hydration, Idzerda SM, Imaizumi S, Imminent Death, Informed Consent, Intensive Care, Interpersonal Communication, Katz AL, Klick J, Klipstein S, Laskey A, Laventhal N, Legal Aspect, Legano LA, Leventhal JM, Life-sustaining Medical Treatment, Linebarger JS, Lord B, MacAuley RC, MacMillan H, Medical Ethics, Medical Expert, Medical Information, Medical Procedures, Medical Specialist, Medically Administered Nutrition And Hydration, Moon MR, Neglect, Neurologic Disease/di [diagnosis], November 2017 List, Nutrition, Okun AL, Opel DJ, Oxygenation, Pain/th [therapy], Palliative Therapy, Parker S, Patient Care Planning, Pediatrician, Pediatrics, Practice Guideline, Priority Journal, Prognosis, Quality Of Life, Resuscitation, Rivera F, shared decision making, Social Support, Spiritual Care, Statter MB, Stedt E, Survival, Teamwork, Terminal Care, Tissue Perfusion, Uncertain Prognosis, Weise KL

Impact of Specialized Pediatric Palliative Care: A Systematic Review

CONTEXT: Specialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed. OBJECTIVE(S): To assess the effects of providing SPPC to…

Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model

Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented…

Navigating Decisional Discord: The Pediatrician's Role When Child and Parents Disagree

From the time when children enter the preteen years onward, pediatric medical decision-making can entail a complex interaction between child, parents, and pediatrician. When the child and parents disagree regarding medical decisions, the pediatrician…

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 integration in pediatric cardiac intensive care units: A novel champion-based model

Learning Objectives: Integration of pediatric palliative care (PPC) into the management of children with serious illness and their families is widely endorsed by international organizations and experts in the field as standard of care. However,…

Palliative communication skills training for pediatric nurse practitioners: A novel program with booster sessions

Communication between pediatric providers, patients, and their families is a key component of for children with serious illness, with broad implications for patient and family outcomes. Recommendations for effective and compassionate palliative…

Pediatric Palliative Telehealth Care from Hospital to Hospital: A Pilot Project (QI653)

Objectives: * Explain a novel method for creating pediatric palliative care resources using telehealth technology. * Describe preliminary data demonstrating project feasibility and satisfaction.

Perinatal hypoxic-ischaemic encephalopathy: a national survey of end-of-life decisions and palliative care

Objective To explore end-of-life (EoL) decision-making and palliative care in hypoxic-ischaemic encephalopathy (HIE) nationwide. Methods A cross-sectional national study on moderate-to-severe HIE in newborns ≥35 weeks’ gestational age in 2015,…

Priorities for Nutrition Research in Pediatric Critical Care

BACKGROUND: Widespread variation exists in pediatric critical care nutrition practices, largely because of the scarcity of evidence to guide best practice recommendations. OBJECTIVE: The objective of this paper was to develop a list of topics to be…

Psychologists as Pivotal Members of the Pediatric Palliative Care Team

Context: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists…

Publication guidelines for quality improvement studies in health care: evolution of the SQUIRE project

In 2005 we published draft guidelines for reporting studies of quality improvement, as the initial step in a consensus process for development of a more definitive version. The current article contains the revised version, which we refer to as…

Tags: 2009, Backlog, Batalden PB, Bmj (clinical Research Ed.), Consensus, Davidoff F, Editorial Policies, Forecasting, Interprofessional Relations, Journal Article, Mooney SE, Ogrinc G, Practice Guidelines As Topic, Publishing/standards, Quality Of Health Care, RDF Project, SQUIRE development group, Stevens D

Quality of End-of-Life Care in Children With Neurological Conditions in Belgium: A Population-Level Evaluation Using Face-Validated Quality Indicators

Background/aims: Neurological conditions, such as cerebral palsy and muscular dystrophy, are the main diagnoses of referral for many pediatric palliative care teams. Nevertheless, parents of children with such conditions globally report insufficient…

Tags: 2022, Beernaert K, Cohen J, Consensus, Deliens L, Palliative Medicine, Piette V, Quality Assurance, Reproducibility of Results, September 2022 List, Smets T, Terminal Care, Van Berlaer G

Research methods used in developing and applying quality indicators in primary care

2003

Tags: 2003, Backlog, Bmj (clinical Research Ed.), Braspenning J, Campbell SM, Consensus, Evidence-based Medicine, Health Care, Health Services Research/methods, Humans, Hutchinson A, Journal Article, Marshall MN, Practice Guidelines, Primary Health Care/standards, Quality Indicators, Quality Of Health Care

Research priorities in pediatric palliative care: a delphi study

Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. Objectives: The goal…

Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents and all those who care for them: A systematic scoping review

BACKGROUND:: In planning high-quality research in any aspect of care for children and young people with life-limiting conditions, it is important to prioritise resources in the most appropriate areas. AIM:: To map research priorities identified from…

Tags: 2018, Adolescent, Beresford B, Booth A, Child, Consensus, Delphi Technique, Fraser L, Humans, Infant, January 2019 List, Maddison J, Newborn, Palliative Care, Palliative Medicine, Wright K

Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids.

When provided by a skilled, multidisciplinary team, palliative care is highly effective at addressing the physical, psychological, social, and spiritual needs of dying patients and their families. However, some patients who have witnessed harsh death…

Supporting parental caregivers of children living with life-threatening or life-limiting illnesses: A Delphi study

BACKGROUND: The impact of a child s life-limiting or life-threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental…

The age limit for euthanasia requests in the Netherlands: a Delphi study among paediatric experts

Background The Dutch Euthanasia Act applies to patients 12 years and older, which makes euthanasia for minors younger than 12 legally impossible. The issue under discussion specifically regards the capacity of minors to request euthanasia. Objective…

Tags: 2023, Child, Consensus, de Keijzer SC, Delphi Technique, Euthanasia, Humans, Journal of Medical Ethics, Minors, Netherlands, Pasman HR, September List 2032, Verhagen AAE, Widdershoven G

The COVID-19 pandemic: A rapid global response for children with cancer from SIOP, COG, SIOP-E, SIOP-PODC, IPSO, PROS, CCI, and St Jude Global

The COVID-19 pandemic is one of the most serious global challenges to delivering affordable and equitable treatment to children with cancer we have witnessed in the last few decades. This Special Report aims to summarize general principles for…

The Delphi technique: myths and realities

AIMS: To outline the key concepts and principles of the Delphi technique. METHODS: Reference is made to a selection of studies that illustrate a variety of methodological interpretations. Drawing on Heshusius's concept of 'goodness criteria',…

Tags: 2003, Backlog, Consensus, Delphi Technique, Expert Testimony, Journal Article, Journal Of Advanced Nursing, Powell C

Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer

For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established,…

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