Browse Items · Pediatric Palliative Care Library

Outcomes of Children With Severe Bronchopulmonary Dysplasia Who Were Ventilator Dependent at Home

Respiratory outcomes of patients with bronchopulmonary dysplasia (BPD) range from no oxygen requirement to chronic respiratory failure. Outcomes of least severe types of BPD are well described. Limited data exist on outcomes of patients with…

Tags: 2013, Backlog, Journal Article, Pediatrics

Policy statement--health equity and children's rights.

Many children in the United States fail to reach their full health and developmental potential. Disparities in their health and well-being result from the complex interplay of multiple social and environmental determinants that are not adequately…

Tags: 2010, Backlog, Child, Child Advocacy/economics/standards, Health Policy/economics, Healthcare Disparities/economics/standards, Humans, Journal Article, Medical/standards, Pediatrics, Pediatrics/standards, Societies, United States

Parental knowledge and opinions on palliative care for children

Purpose: A pilot study to ascertain awareness and understanding of palliative care among parents of pediatric patients at a single academic medical center.

Effectiveness of a Clinical Pathway for the Emergency Treatment of Patients With Inborn Errors of Metabolism

2008-12

Tags: 2008, Backlog, Brown KM, Campbell JK, Chamberlain JM, Journal Article, Lichter-Konecki U, Pediatrics, Salehi V, Zand DJ

Parent Health and Functioning 13 Months After Infant or Child NICU/PICU Death

BACKGROUND: After a child's death, parents may experience depression, posttraumatic stress disorder (PTSD), and increased risk for cancers, diabetes, psychiatric hospitalization, and suicide. Racial/ethnic differences are unknown. This longitudinal…

Tags: 2013, Backlog, Brooten D, Cantwell GP, Child Death, Del Moral T, Infant Death, Journal Article, Nicu, parent chronic conditions, parent mental health, Pediatrics, Picu, Totapally Balagangadhar, Youngblut JM

Videoconferencing to reduce stress among hospitalized children

OBJECTIVES: Family-Link is a videoconferencing program that allows hospitalized children and their parents to virtually visit family members and friends using laptops, webcams, and a secure Wi-Fi connection. We evaluated the association of…

Pediatric organ donation and transplantation

BACKGROUND AND OBJECTIVES: There is increasing unmet need for solid organ donation. Alternative donor sources, such as donation after circulatory determination of death (DCDD), are needed. The objective of this study was to examine the impact of DCDD…

Infants' Best Interests in End-of-life Care for Newborns

BACKGROUND AND OBJECTIVES: Pediatric bioethics presumes that decisions should be taken in the child's best interest. If it's ambiguous whether a decision is in the child's interest, we defer to parents. Should parents be permitted to consider their…

Tags: 2014, Backlog, End-of-Life Decisions in Severely Ill Newborns of the Royal Dutch Medical Association Committee, Journal Article, Pediatrics, van Wijlick E, Verhagen AAE, Willems DL

Caregiver Experience in Pediatric Dialysis

BACKGROUND AND OBJECTIVES: Pediatric dialysis is thought to be burdensome on caregivers given their need to assume dual responsibilities of parental and medical management of their child's chronic illness. In this study, we seek to describe the…

Tags: 2019, Cedars K, Lepere K, March 2019 List, Neul S, Opel D, Pediatrics, Wightman A, Zimmerman C T

Allowing Adolescents and Young Adults to Plan Their End-of-Life Care

OBJECTIVE:The objective of this study was to assess and compare the usefulness, helpfulness, and stress associated with reviewing a previously adapted advance care planning guide, My Thoughts, My Wishes, My Voice, in comparison with the widely used…

Tags: 2012, Backlog, Baird K, Ballard E, Battles H, Journal Article, Osherow J, Pao M, Pediatrics, Wiener L, Zadeh S

Children's End-of-life Health Care Use And Cost

BACKGROUND AND OBJECTIVES: Heath care use and cost for children at the end of life is not well documented across the multiple sectors where children receive care. The study objective was to examine demographics, location, cause of death, and health…

Tags: 2017, Cause Of Death, Chalifoux M, Child, Health Care Costs, May 2017 List, Only Child, Pediatrics, Rapoport A, Seow H, Tanuseputro P, Terminal Care, Widger K

Views of adolescents and parents on pediatric research without the potential for clinical benefit

Supporting the family after the death of a child.

The death of a child can have a devastating effect on the family. The pediatrician has an important role to play in supporting the parents and any siblings still in his or her practice after such a death. Pediatricians may be poorly prepared to…

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

"Good-Parent Beliefs": Research, Concept, and Clinical Practice

Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the…

Tags: 2020, Administration, Communication Skills, Feudtner C, Hinds P S, Hospice, interpersonal skills, July 2020 List, October T, Palliative Medicine, Pediatrics, Practice Management, Weaver M S

The natural history of type B Niemann-Pick disease: Results from a 10-year longitudinal study.

OBJECTIVES: Type B Niemann-Pick disease (NPD-B) caused by acid sphingomyelinase deficiency is a rare, autosomal recessive, lysosomal storage disorder with a broad range of disease severity. The objectives of this study were to document the natural…

Relational autonomy: moving beyond the limits of isolated individualism

Although clinicians may value respecting a patient's or surrogate's autonomy in decision-making, it is not always clear how to proceed in clinical practice. The confusion results, in part, from which conception of autonomy is used to guide ethical…

The Factors Associated With High-Quality Communication for Critically Ill Children

OBJECTIVE:: Timely, high quality communication with families is essential to family-centered decision-making. Quality communication is represented by widespread documentation of prognostic, goals-of-care conversations (PGOCC) in the pediatric…

Tags: 2013, Backlog, Benneyworth BD, Davis MM, Housey M, Journal Article, Pediatrics, Walter JK

If I could just chime in here': ”: Communication Patterns of Interprofessional Teams in the Pediatric Cardiac Intensive Care Unit

Purpose: To describe the communication of interdisciplinary teams in a pediatric cardiac intensive care unit (CICU) when developing care plans and preparing for family meetings because little is known about how interdisciplinary teams communicate…

Tags: 2018, Arnold R, DeWitt A, Feudtner C, Pediatrics, Schall T, September 2018 List, Walter J

Interprofessional Team Meetings in the Pediatric Cardiac Intensive Care Unit

Purpose: To evaluate communication behaviors and interprofessional team interactions during family meetings in the pediatric cardiac intensive care unit (CICU) because little is known about how interdisciplinary teams communicate with each other…

Tags: 2018, Arnold R, DeWitt A, Feudtner C, Pediatrics, Sachs Emily, September 2018 List, Walter J

Advance directives in a pediatric emergency department.

Parents of children with terminal illnesses are not always present when a life-threatening event occurs. For many of these children, an advance directive specifying alternate code orders has been written by the parent or legal guardian (hereafter the…

Death in the intensive care nursery: physician practice of withdrawing and withholding life support

OBJECTIVE: To determine the frequency of selective nontreatment of extremely premature, critically ill, or malformed infants among all infant deaths in a level III intensive care nursery (ICN) and to determine the reasons documented by neonatologists…

Why Do Neonatologists in Scandinavian Countries and the Netherlands Make Life-and-death Decisions So Different?

An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are…

Tags: 2018, Attitude Of Health Personnel, Clinical Decision-Making/mt [Methods], Humans, Infant, Infant Care/mt [Methods], Infant Care/px [Psychology], Infant Care/st [Standards], July 2019 List, Neonatologists/px [psychology], Neonatologists/st [Standards], Netherlands/ep [Epidemiology], Newborn, Pediatrics, Scandinavian and Nordic Countries/ep [Epidemiology], Survival Rate/td [Trends], Verhagen A A E, Withholding Treatment/st [Standards]

The natural course of infantile Pompe's disease: 20 original cases compared with 133 cases from the literature

OBJECTIVE: Infantile Pompe's disease is a lethal cardiac and muscular disorder. Current developments toward enzyme replacement therapy are promising. The aim of our study is to delineate the natural course of the disease to verify endpoints of…

Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease

The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program…

In the Best Interest of the. . .Parents: Norwegian Health Personnel on the Proper Role of Parents in Neonatal Decision-making

OBJECTIVES: The role of parents in life-and-death decision-making for infants born at the border of viability is challenging. Some argue that parents should have the final say in decisions about life-sustaining treatment. Others disagree. In this…

Tags: 2018, November 2018 List, Pediatrics, Syltern J, Ursin L

Long-term safety and efficacy of risperidone for the treatment of disruptive behavior disorders in children with subaverage IQs

OBJECTIVE: The objective of this study was to investigate the long-term safety and efficacy of risperidone in disruptive behavior disorders in children with subaverage IQs. Disruptive behavior disorders were defined as oppositional defiant disorder,…

Cystic fibrosis and transition to adult medical care

Transition of young adults with cystic fibrosis (CF) from pediatric to adult medical care is an important priority, because many patients are living well into their fourth decade, and by 2010 more than half of all people living with CF will be older…

Tags: 2010, Adolescent, Adolescent Transitions, Age Factors, Backlog, Britto MT, Cystic Fibrosis/therapy, Humans, Journal Article, Pediatrics, Referral And Consultation, Sawicki GS, Schwartz L, Tuchman LK, Young Adult

Modes of Death Within a Children's Hospital

BACKGROUND: Knowledge about how children die in pediatric hospitals is limited, and this hinders improvement in hospital-based end-of-life care. METHODS: We conducted a retrospective chart review of all the patients who died in a children's hospital…

Pediatric cardiopulmonary resuscitation: advances in science, techniques, and outcomes

More than 25% of children survive to hospital discharge after in-hospital cardiac arrests, and 5% to 10% survive after out-of-hospital cardiac arrests. This review of pediatric cardiopulmonary resuscitation addresses the epidemiology of pediatric…

Pediatricians' attitudes affecting decision-making in defective newborns

A questionnaire designed to identify the factors that influence the resolution of ethical dilemmas was returned by 230 (57% of the total) Massachusetts pediatricians. The decision to recommend surgery for an infant with Down's syndrome with duodenal…

Pediatricians' perceptions of and preferred timing for pediatric palliative care

2009

Tags: 2009, Backlog, Journal Article, Knapp C, Madden V, Pediatrics, Shenkman EA, Thompson LA

Risk Stratification For Opioid Misuse In Children, Adolescents, And Young Adults: A Quality Improvement Project

BACKGROUND: The Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center (CCHMC) provides opioids to a large population of patients in the ambulatory setting. Before this project, PACT had no reliable system…

Tags: 2016, Ashby M, February 2017 List, Meyer M, Pediatrics, Porter K, Tate M, Thienprayoon R

Risk Stratification For Opioid Misuse In Children, Adolescents, And Young Adults: A Quality Improvement Project

BACKGROUND:
The Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center (CCHMC) provides opioids to a large population of patients in the ambulatory setting. Before this project, PACT had no reliable system…

Tags: 2016, Ashby M, Children & Youth, December 2016 List, Drug Use, Meyer M, Narcotics, Pediatrics, Porter K, Tate M, Teenagers, Thienprayoon R, Young Adult

Pediatric Suffering and the Burden of Proof

The alleviation of suffering has always been central to the care of the sick. Yet as medical technology has advanced and life-sustaining treatments multiplied, medicine's capacity to both prevent and create suffering has grown exponentially. In…

Tags: 2020, burden of proof, pediatric suffering, Pediatrics, September 2020 List, Tate T

Nature of conflict in the care of pediatric intensive care patients with prolonged stay

OBJECTIVE: To determine the frequency, types, sources, and predictors of conflict surrounding the care of pediatric intensive care unit (PICU) patients with prolonged stay. SETTING: A tertiary care, university-affiliated PICU in Boston. PARTICIPANTS:…

New and lingering controversies in pediatric end-of-life care

OBJECTIVES: Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of…

Going Straight to the Source: A Pilot Study of Bereaved Parent-facilitated Communication Training for Pediatric Subspecialty Fellows

BACKGROUND: Medical trainees consistently report suboptimal instruction and poor self-confidence in communication skills. Despite this deficit, few established training programs provide comprehensive, pediatric-specific communication education,…

Tags: 2018, April 2018 List, Baker JN, Bereavement, Cunningham MJ, Kaye E, Levine DR, Mahoney D, Pediatrics, Pilot Projects, Snaman JM, Sykes A

Pediatric clinical research networks: current status, common challenges, and potential solutions

OBJECTIVES: The goals were (1) to describe and to characterize pediatric clinical research networks (PCRNs) in the United States and Canada, (2) to identify PCRN strengths and weaknesses, (3) to evaluate the potential for collaboration among PCRNs,…

Tags: 2010, Backlog, Biomedical Research/organization & administration, Bocian AB, Cooperative Behavior, Harris DL, Humans, Journal Article, Medical, Pediatrics, Research Support as Topic, Slora EJ, Societies, United States, Wasserman RC

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…

Browse Items (237 total)