Browse Items · Pediatric Palliative Care Library

"Quality of life": parent and neonatologist perspectives

OBJECTIVE: To assess how physicians and families understand quality of life (QOL) for NICU patients, and to explore the feasibility of developing a standardized definition for QOL. STUDY DESIGN: Surveys were developed and administered to…

Tags: 2020, Adams S Y, Clark M A, Journal Of Perinatology, Lechner B E, May 2020 List, Medical Ethics, Quality Of Life, Tucker R

Barriers in care for children with life-threatening conditions: a qualitative interview study in the Netherlands

OBJECTIVE: To identify barriers, as perceived by parents, to good care for children with life-threatening conditions. DESIGN: In a nationwide qualitative study, we held in-depth interviews regarding end-of-life care with parents of children (aged 1…

Tags: 2020, August 2020 List, Bmj Open, Brouwer M, Hein I, Maeckelberghe E L M, Medical Ethics, paediatric palliative care, Palliative Care, van der Heide A, Verhagen E

A review of approaches for resolving disputes between physicians and families on end-of-life care for newborns

Tags: 2020, Cummings B M, End-of-life Care, Ethics, Families, Journal Of Perinatology, July 2020 List, Medical Ethics, Mercurio M R, Newborns, Paris J J, Physicians

Assessing Ethics Knowledge: Development of a Test of Ethics Knowledge in Neonatology

OBJECTIVE: To develop and validate the Test of Ethics Knowledge in Neonatology (TEK-Neo) with good internal consistency reliability, item performance, and construct validity that reliably assesses interprofessional staff and trainee knowledge of…

Decision-Making in Imminent Extreme Premature Births: Perceived Shared Decision-Making, Parental Decisional Conflict and Decision Regret

Objective: To describe levels of perceived shared decision making (SDM), decisional conflict (DC), and decision regret (DR) in prenatal counseling by pregnant women, partners, neonatologists, and obstetricians regarding decision-making around…

Tags: 2021, 2022 Special Edition 2 - Parent Perspectives, Bekker MN, Decision Making, Geurtzen R, Hogeveen M, Huisman JJ, Journal Of Perinatology, Lutke HEM, Medical Ethics, Paediatrics, Palliative Care, premature birth, Quality Of Life, van den Heuvel JFM

Ethical Dilemmas at the Beginning and End of Life: A Needs-Based, Experience-Informed, Small-Group, Case-Based Curriculum for Pediatric Residents

Introduction: Pediatric residents are faced with ethical dilemmas in beginning- and end-of-life situations throughout their training. These situations are innately challenging, yet despite recommendations that residents receive training in ethics and…

Tags: 2020, Artificial Nutrition, deSante-Bertkau J, End Of Life, Ethics/Bioethics, Futility, Herbst L A, Hospice, June 2020 List, MedEdPORTAL, Medical Ethics, Neonatal-Perinatal Medicine, Neonatology, Palliative Care, Palliative Medicine, Pediatrics, Terminal Care

Establishing a multistakeholder research agenda: lessons learned from a James Lind Alliance Partnership

OBJECTIVE: The James Lind Alliance (JLA) offers a method for better aligning health and care agenda's with the needs of patients, carers and clinicians by bringing them together in a Priority Setting Partnership (PSP). In this paper, we draw…

Tags: 2022, 2023 SE1 - Parent Perspectives, Biomedical Research, Bmj Open, Caregivers, ETHICS (see Medical Ethics), Health Policy, Health Priorities, Humans, Jongsma KR, Medical Ethics, Milota MM, Paediatric rheumatology, Patient Participation, Quality In Health Care, Research Design

Opinions of Israeli neonatologists about life and death decisions in neonates

Background:: In 2005, the Israeli parliament passed the "law of dying patients" legalizing life and death decisions (do not resuscitate) in patients with life expectancy less than 6 months. Objective:: To determine whether ethnic and religious…

Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit

Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest,…

Palliative Care After Neonatal Intensive Care: Contributions Of Leonetti Law And Remaining Challenges

Pediatric palliative medicine in Brazil: an ethical reflection of medical practice

The ethical barriers involved in the practice of pediatric palliative medicine remain high and challenging. In terms of medical ethics, attention should be paid to culture, religion and family values, in order to promote adequate care for caregivers,…

Parents' experiences of palliative care decision-making in neonatal intensive care units: An interpretative phenomenological analysis

Aim: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. Methods: Audio-recorded face-to-face interviews were…

Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates

Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the…

Palliative care in neonatal period and ethical issues

Perinatal palliative care is the active total care of the fetus who has been diagnosed with a life-limiting condition with his/her entirety and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless…

When paediatricians and families can't agree

Recent high-profile cases have highlighted the difficulties that professionals caring for terminally ill or technology dependent children face. I am a paediatrician. I see children with severe problems, often chronic and frequently without a cure,…

Tags: 2018, April List 2024, Archives of Disease in Childhood, Child, Child Health Care, Conflict, Ethics, Experimental Therapy, Human, Infant, Medical Ethics, Preschool Child, Terminal Care, Treatment Outcome, Treatment Withdrawal, United Kingdom, Wallis C

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

Ethical Dilemmas In Postnatal Treatment Of Severe Congenital Hydrocephalus.

Severe congenital hydrocephalus manifests as accumulation of a large amount of excess fluid in the brain. It is a paradigmatic example of a condition in which diagnosis is relatively straightforward and long-term survival is usually associated with…

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