Browse Items · Pediatric Palliative Care Library

Parents' Perspectives on Hospital Care for Children and Adolescents with Life-Limiting Conditions: A Grounded Theory Analysis of Narrative Interviews

Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care…

Tags: 2019, 2022 Special Edition 1 - Parent Perspectives, Ambulatory Care, Engler F, Engler J, Erler A, Gerlach FM, Gruber D, Hach M, Hospitals, Journal of Palliative Medicine, Kuss K, Palliative Care, Parents, Pediatrics, Qualitative Research, Seipp H, Ulrich LR

Parental Perceptions of Hospital-Based Bereavement Support Following a Child's Death From Cancer: Room for Improvement

CONTEXT: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents…

Tags: 2021, 2022 Special Edition 2 - Parent Perspectives, Bereavement, Bereavement Support, Child, Childhood Cancer, Dole OR, Grief, Helton G, Hospitals, J Pain Symptom Manage, Morris SE, Neoplasms/therapy, Parents, Perception, Snaman JM, Wolfe J

Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review

Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric…

Standards of Hospice Care for Children

1993

Tags: 1993, Anonymous, Backlog, Children, Hospices, Hospitals, Journal Article, NET Grey Lit, Quality Of Health Care, Special

Medical care utilization by incurable cancer patients in a Swedish county

A retrospective study of patients with cancer diagnoses treated at a Swedish county hospital was carried out in order to analyse medical care utilization by incurable cancer patients. All 208 patients customarily treated at the Department of General…

Decisions to forgo life-sustaining therapy in ICU patients independently predict hospital death

OBJECTIVE: More than one-half the deaths of patients admitted to intensive care units (ICUs) occur after a decision to forgo life-sustaining therapy (DFLST). Although DFLSTs typically occur in patients with severe comorbidities and intractable acute…

Impact of palliative care case management on resource use by patients dying of cancer at a Veterans Affairs medical center

BACKGROUND: The VA Puget Sound Health Care System (VAPSHCS) started a palliative care service (PCS) in October 2001 to provide case management for patients with advanced cancer. OBJECTIVE: To examine resource use during the last 60 days of life for…

Supportive care: palliative care in children, adolescents, and young adults--model of care, interventions, and cost of care: a retrospective review

Factors associated with congruence between preferred and actual place of death

Congruence between preferred and actual place of death may be an essential component in terminal care. Most patients prefer a home death, but many patients do not die in their preferred location. Specialized (physician, hospice, and palliative) home…

Utilization and costs for children who have special health care needs and are enrolled in a hospital-based comprehensive primary care clinic

OBJECTIVE: When deciding how much hospital resources should be allocated to comprehensive primary care clinics for children with multisystem disorders, it is important to consider all of the non-primary care revenue streams associated with these…

Perceptions of the term palliative care

OBJECTIVES: To assess parents' and health care providers' perceptions of the name and description of a pediatric palliative care (PPC) program. METHODS: Survey conducted at three pediatric health care sites; asked respondents (parents and staff)…

Life-Limiting Conditions at a University Pediatric Tertiary Care Center: A Cross-Sectional Study

BACKGROUND: The increasing number of children with life-threatening and life-limiting conditions requires an individualized approach and additional supportive care in hospitals. However, these patients' characteristics and their prevalence in a…

Tags: 2018, Bosch A, Chronic Disease, End-of-life Care, Frenzel H, Hospitals, January 2018 List, Journal of Palliative Medicine, Krude H, Life-limiting Conditions, Palliative Care, Pediatrics, Reindl T, Thalemann R, Wager J, Zernikow B

Pediatric pain practices: a national survey of health professionals

The purpose of this study was to examine how health-care providers in U.S. teaching hospitals assess and manage children's pain. A 59-item questionnaire was sent to institutions with pediatric residency programs listed in the 1992 National Residency…

Tags: 1996, Alexander M, Backlog, Broome ME, Child, Hospitals, Humans, Journal Article, Journal of Pain and Symptom Management, Maikler V, Pain Measurement, Pain/therapy, Physician's Practice Patterns, Questionnaires, Richtsmeier A, Teaching, United States

End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses

OBJECTIVE: To determine the attitudes and practices of pediatric critical care attending physicians and pediatric critical care nurses on end-of-life care. DESIGN: Cross-sectional survey. SETTING: A random sample of clinicians at 31 pediatric…

The moral experience of parents regarding life-support decisions for their critically-ill children: a preliminary study in France

The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear…

Why Are There So Few Ethics Consults in Children's Hospitals?

In most children's hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that…

Does a palliative care clinic have a role in improving end-of-life care? Results of a pilot program

OBJECTIVE: To assess the efficacy of a palliative care clinic (PCC), which provided some of the interdisciplinary services and expertise of an inpatient consult service to outpatients, in traditional clinic sessions. DESIGN: Chart review. SETTING: A…

Pharmacological Management of Symptoms in Children with Life-Limiting

Background: The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear. Objective: To determine medications available and…

Exploring communication difficulties in pediatric hematology: oncology nurses

BACKGROUND: Communication plays an important role for the well being of patients, families and also health care professionals in cancer care. Conversely, ineffective communication may cause depression, increased anxiety, hopelessness and decreased of…

Unlicensed and off label analgesic use in paediatric pain management

BACKGROUND: The management of pain in children has advanced enormously in recent years. Pharmacological treatment of pain is complicated however, by the widespread use of unlicensed and off label medicines in the paediatric population, leading to…

Tags: 2001, Analgesics/therapeutic use, Backlog, Child, Conroy S, Drug Approval, Drug Utilization, Great Britain, Hospitals, Humans, Journal Article, Paediatric Anaesthesia, Pain/drug Therapy, Peden V, Pediatric, Prospective Studies

Adverse childhood experiences and lifetime suicide ideation: a cross-sectional study in a non-psychiatric hospital setting

We have assessed the effect of adverse childhood experiences on the lifetime prevalence of suicide ideation in a cross-sectional study involving 182 patients aged 18 to 44 years, consecutive attenders at an A&E review clinic. All participants were…

Hospital charges for a community inpatient palliative care program

Defining financial parameters of palliative care (PC) is important for providing sustainable programming. In our study, we evaluated hospital length of stay (LOS) and charges for the first 164 inpatient PC consultations performed by the Advanced…

Consultation with children in hospital: children, parents' and nurses' perspectives

AIMS AND OBJECTIVES: To explore children's, parents' and nurses' views on participation in care in the healthcare setting. BACKGROUND: Children have a right to be consulted and involved in their care. DESIGN: The grounded theory method was used and…

A typology of fatigue in children with cancer

Fatigue in adults with cancer has received considerable attention as a troublesome symptom that requires nursing intervention. Fatigue in children with cancer, however, has received considerably less focus. The first phase of the present study used…

Age limits and transition of health care in pediatric emergency medicine

OBJECTIVE: To describe the practice reported by pediatric emergency department (PED) medical directors regarding age limits and transition of health care in their emergency departments and institutions. METHODS: A 28-question survey was sent by…

A mother's perspective: the power of holistic care for the terminally ill child

This is the account of a mother who lived through the 5-year experience of watching her child fight and finally succumb to a genetic disorder. Lessons about caring practices and insights into the needs of patients and families are emphasized.

Barriers to conducting advance care discussions for children with life-threatening conditions.

BACKGROUND AND OBJECTIVE: Advance care discussions (ACD) occur infrequently or are initiated late in the course of illness. Although data exist regarding barriers to ACD among the care of adult patients, few pediatric data exist. The goal of this…

Siblings’ voices: A prospective investigation of experiences with a dying child

Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal, qualitative study over 2 years using interpretive descriptive…

Parents' Perspectives on Hospital Care for Children and Adolescents with Life-Limiting Conditions: A Grounded Theory Analysis of Narrative Interviews

Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care…

Tags: 2019, Ambulatory Care, Engler F, Engler J, Erler A, Gerlach F M, Gruber D, Hach M, Hospitals, January 2020 List, Journal of Palliative Medicine, Kuss K, Palliative Care, Parents, Pediatrics, Qualitative Research, Seipp H, Ulrich L R

The effect of inpatient hospice units on hospice use post-admission

The objective of this study was to determine whether having a hospice unit within the hospital increases the proportion of terminally ill patients who use hospice services (including home, nursing home, or inpatient hospice) post-admission. Using…

Characteristics of deaths occurring in children's hospitals: implications for supportive care services

CONTEXT: End-of-life care is an important yet underdeveloped component of pediatric hospital services. OBJECTIVES: We sought 1) to describe the demographics of children who die in children's hospitals, 2) to describe the prevalence of complex chronic…

Distance from home when death occurs: a population-based study of Washington State, 1989-2002

OBJECTIVE: For patients who die in hospitals, the regionalization of tertiary health care services may be increasing the home-to-hospital distance, particularly for younger patients whose care is especially regionalized and for whom access to and use…

Identifying futility in a paediatric critical care setting: a prospective observational study

AIMS: To determine the extent of futile care provided to critically ill children admitted to a paediatric intensive care setting. METHODS: Prospective evaluation of consecutive admissions to a 20 bedded multidisciplinary paediatric intensive care…

Validation of a decision rule identifying febrile young girls at high risk for urinary tract infection

OBJECTIVE: To validate a previously published clinical decision rule to predict risk of urinary tract infection in febrile young girls. METHODS: We performed a retrospective case-control study at a children's hospital emergency department in a…

Congenital neurodevelopmental diagnoses and an intensive care unit: defining a population

OBJECTIVE: To identify and describe the population of children with congenital or perinatally acquired neurodevelopmental diagnoses in a pediatric intensive care unit and to assess the nature and extent of their utilization of critical care…

Evaluation of patient-care protocol use by various providers

Preparing for an initial JCAHO survey: one hospice's experience

2001

Tags: 2001, American Journal of Hospice & Palliative Medicine, Backlog, Data Collection, Groves LE, Health Surveys, Hospices, Hospitals, Journal Article, Special

Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients

OBJECTIVE: The role of family interests in medical decision making is controversial. Physicians who routinely treat incompetent patients may have preferred strategies for addressing family interests as they are encountered in surrogate medical…

Demographic and Clinical Differences Between Applied Definitions of Medical Complexity

OBJECTIVES: To identify the degree of concordance and characterize demographic and clinical differences between commonly used definitions of multisystem medical complexity in children hospitalized in children's hospitals. METHODS: We conducted a…

Tags: 2022, Child, Chronic Disease, Cross-sectional Studies, Demography, Goodman DM, Heneghan JA, Hospital Pediatrics, Hospitalization, Hospitals, Humans, Infant, October 2022 List, Pediatric, Ramgopal S, Retrospective, Studies

Do hospital-based palliative teams improve care for patients or families at the end of life?

To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative…

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