Browse Items · Pediatric Palliative Care Library

Expert Survey on Coverage and Characteristics of Pediatric Palliative Care in Europe - A Focus on Home Care

BACKGROUND: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care…

Parent engagement in perinatal mortality reviews: an online survey of clinicians from six high-income countries

OBJECTIVE: Parent engagement in perinatal mortality review meetings following stillbirth may benefit parents and improve patient safety. We investigated perinatal mortality review meeting practices, including the extent of parent engagement, based on…

Response and role of palliative care during the COVID-19 pandemic: A national telephone survey of hospices in Italy

Background: Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. Aim(s): To examine preparedness for, and impact of, the…

Tags: 2020, Costantini M, COVID-19, End-of-life Care, epidemics, Health Care Surveys, Higginson I J, Hospice Care, Hospices, Palliative Care, Palliative Medicine, Pandemics, Peruselli C, September 2020 List, severe acute respiratory syndrome coronavirus 2, Sleeman K E

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…

Hospice nurses request paediatric-specific educational resources and training programs to improve care for children and families in the community: Qualitative data analysis from a population-level survey

BACKGROUND: Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific…

Tags: 2019, Applegarth J, Baker JN, Education, Gattas M, Health Care Surveys, Hospice And Palliative Care Nursing, Hospice Care, Kaye EC, Kiefer A, Nursing, Paediatrics, Palliative Care, Palliative Medicine, Qualitative Research, Reynolds J, September 2019 List, Zalud K

Characteristics of family conferences at the bedside versus the conference room in pediatric critical care

OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians…

Opinions of members of the National Civil (Family Proceedings) and Criminal Courts in withholding or withdrawing of life support situations in pediatrics

INTRODUCTION: The possibility of sustaining life functions makes it difficult to distinguish between a dying patient and a patient with chances of survival, raising a dilemma for everyone around them. On the one side, continuing with life support…

Toward youth friendly services: a survey of young people in primary care

BACKGROUND: The World Health Organization encourages the development of youth friendly services, yet little is known on how youth currently present in general practice. OBJECTIVE: To describe the perspectives, expectations, and service receipt of…

Implementation of European standards of care for cystic fibrosis - provision of care

BACKGROUND: Several guidelines for cystic fibrosis (CF) caregivers exist, but information about their implementation is lacking. METHODS: Adherence to European Consensus Guidelines for CF was studied by sending surveys to named healthcare…

Tags: 2009, Adolescent Transitions, Backlog, Bertram C, Caregivers, Cystic Fibrosis/therapy, Elborn JS, Europe, Guideline Adherence, Health Care Surveys, Hodson M, Humans, Journal Article, Journal of Cystic Fibrosis, Patient Care/standards, Practice Guidelines As Topic, Questionnaires

Training in difficult conversations: a national survey of pediatric hematology-oncology and pediatric critical care physicians

BACKGROUND: In pediatric oncology and critical care, physicians give difficult news, including discussions regarding palliative care and comfort measures, but there are minimal data regarding fellowship program preparation for this task. PURPOSE: We…

Family support in pediatric palliative care: how are families impacted by their children's illnesses?

CONTEXT: Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service…

Finding the right words: using the terms allow natural death (AND) and do not resuscitate (DNR) in pediatric palliative care.

When children are dying in a hospital setting, healthcare providers need to help families make important end-of-life care decisions. Most providers use the term do not resuscitate (DNR) when suggesting a course of action that involves not using…

Improving transition from pediatric to adult cystic fibrosis care: lessons from a national survey of current practices

OBJECTIVES: More than 500,000 adolescents with special health care needs age into adulthood each year in the United States, and there is growing recognition of the need for support of their transition to adult-oriented health care. Because of…

Hidden consequences of success in pediatrics: parental health-related quality of life--results from the Care Project

CONTEXT: The number of parents who care for a chronically ill child is increasing. Because of advances in medical care, parental caring tasks are changing. A detailed description of parental health-related quality of life will add to the…

Parental presence during invasive procedures and resuscitation: attitudes of health care professionals in Turkey

OBJECTIVES: An agreement among physician, nurse, and family on the issue and a solution developed by all will improve the quality of work. The aims of this study were to determine health care professionals' (physicians and nurses) attitude toward…

Parent and physician perspectives on quality of care at the end of life in children with cancer

PURPOSE: To ascertain parents' and physicians' assessments of quality of end-of-life care for children with cancer and to determine factors associated with high-quality care as perceived by parents and physicians. METHODS: A survey was conducted…

Practice patterns in pediatric consultation-liaison psychiatry: a national survey

The purpose of this survey was to describe the current status of pediatric consultation-liaison (C-L) services in the United States. A total of 144 pediatric C-L programs were surveyed, with a response rate of 33%. Financial and staffing constraints…

Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care

The purpose of this study was to investigate how adolescents and adults with cystic fibrosis (CF) view preventive counseling and their transition to adult-centered care within a children's hospital. Thirty-two patients >/=16 years old diagnosed with…

Survey of specialized tertiary care facilities for adults with congenital heart disease

BACKGROUND: Specialized tertiary care facilities developed in response to the increasing numbers of adults with congenital heart disease (CHD). Because this patient population comprises a relatively new area of specialized cardiovascular interest,…

Health services use and health care expenditures for children with disabilities

OBJECTIVE: To examine health care utilization and expenditure patterns for children with disabilities. METHODS: Secondary data analysis was conducted of the 1999 and 2000 editions of the Medical Expenditure Panel Survey (MEPS), a nationally…

Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views

Although general principles guiding the transition of individuals with chronic illness from pediatric to adult care have been established, guidelines specific for the transition of individuals with cystic fibrosis (CF) have not. To aid in the…

Adolescent girls' and boys' preferences for provider gender and confidentiality in their health care

PURPOSE: To assess the influence of demographic variables and health risk status on adolescents' preferences and actual receipt of services regarding provider gender, sharing a physician with parents, and private examinations. METHODS: Data from…

Beliefs about pain among professionals working with children with significant neurologic impairment

2001

Tags: 2001, Adult, Attitude Of Health Personnel, Backlog, Caregivers, Child, Child welfare, Developmental Medicine and Child Neurology, Female, Health Care Surveys, Humans, Journal Article, Male, Nervous System Diseases/complications, O'Donnell ME, Oberlander T, Pain, Physician-patient Relations, Quality Of Life

What is wrong with end-of-life care? Opinions of bereaved family members

OBJECTIVE: To describe family perceptions of care at the end of life. METHODS: In a representative sample of older people who died from chronic diseases, family members were interviewed about satisfaction with treatment intensity, decision-making,…

Advancing social work practice in end-of-life care

Insufficient training of health professionals has often been cited as a major barrier to improving the system of care for dying patients and for the bereaved. Although specific problems have been identified for physicians and nurses, the problems of…

Tags: 1999, Backlog, Bereavement, Christ GH, Continuing, Education, Focus Groups, Health Care Surveys, Humans, Journal Article, New Jersey, New York City, Palliative Care, Social Work in Health Care, Social Work/education, Sormanti M, Terminal Care, United States

Symptoms and Suffering at the End of Life in Children with Cancer

Cancer is the leading cause of nonaccidental death in childhood.1 There has, however, been little evaluation of the overall experience at the end of life of children who are dying of cancer or of their symptoms other than pain.2,3 A number of studies…

Tags: 2000, Anorexia/etiology/therapy, Backlog, Boston, Child, Children's Hospital (Boston), Clodronate, Constipation/etiology/therapy, Dana-Farber Cancer Institute (Boston), Death and Euthanasia, Diarrhea/etiology/therapy, Dyspnea/etiology/therapy, Ellenbogen JM, Emanuel EJ, Empirical Approach, Fatigue/etiology/therapy, Grier Holcombe E, Health Care Surveys, home care services, Humans, Journal Article, Klar Neil, Levin SB, Logistic Models, Longitudinal Studies, Neoplasms/complications/therapy, New England Journal Of Medicine, Non-U.S. Gov't, Oncology at EOL, P.H.S., Pain/etiology/therapy, Palliative Care/standards/statistics & Numerical Data, Parents, Physicians, Professional Patient Relationship, Psychological, Quality Of Health Care, Quality Of Life, Questionnaires, Research Support, Salem-Schatz S, Stress, Terminal Care, U.S. Gov't, Weeks Jane C, Withholding Treatment, Wolfe J

Forgoing life support: how the decision is made in European pediatric intensive care units

PURPOSE: To determine how decisions to forgo life support are made in European pediatric intensive care units (PICUs). METHODS: A multicenter, prospective study, the Eurydice II study, among 45 PICUs: 20 in France, 21 in Northern/Western (N/W)…

Tags: 2011, Child Preschool, December 2017 List, Decision Making, Devictor DJ, Europe, Female, France, Health Care Surveys, Humans, Intensive Care Medicine, Intensive Care Units Pediatric, Latour JM, Life Support Care, Male, Prospective Studies, Surveys And Questionnaires, Terminal Care/td [trends], Withholding Treatment/sn [statistics & Numerical Data]

Trisomy 18: A survey of opinions, attitudes, and practices of neonatologists

We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal…

Tags: 2016, Adult, American Journal of Medical Genetics Part A, Article, Attitude Of Health Personnel, Attitude To Abortion, Biggio JR, Caucasian, Christian, Chromosomes Human Pair 18, Clinical Practice, Correlation Analysis, December 2017 List, Demography, Disease Management, Disease Severity, Edwards RK, Family, Female, Fetus Malformation, Health Care Surveys, Human, Humans, Intellectual Impairment, Jacobs AP, Male, Marriage, Medical Decision Making, Medical Society, Neonatologist, Neonatologists/px [psychology], Newborn Care, Normal Human, Outcome Assessment (health Care), Palliative Care, Palliative Therapy, Parental Attitude, Philips JB 3rd, Physician Attitude, Practice Patterns Physicians', Prenatal Diagnosis, Priority Journal, Race Difference, Resuscitation, Robin NH, Subramaniam A, Survival Rate, Tang Y, Trisomy 18, Trisomy/di [diagnosis], United States

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