Browse Items · Pediatric Palliative Care Library

Exploring parents' environmental needs at the time of a child's death in the pediatric intensive care unit

OBJECTIVE: Many childhood deaths in the United States occur in intensive care settings. The environmental needs of parents experiencing their child's death in a pediatric intensive care unit must be understood to design facilities that comfort at the…

Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death

OBJECTIVES: Acts of kindness and commemoration by staff members often follow the death of a patient. Acts include attending funerals, sending sympathy cards, sending cards on birthdays/anniversaries, telephoning/visiting family homes, and attending…

Clinical characteristics and survival of trisomy 18 in a medical center in Taipei, 1988-2004.

Trisomy 18 is the second most common autosomal trisomy in newborns. The birth prevalence of this disorder is approximately 1 in 3,000 to 1 in 8,000, and the life span of the majority of patients is less than 1 year. As information regarding outcome…

Hospitalization for mental illness among parents after the death of a child.

BACKGROUND: The loss of a child is considered one of the most stressful events in the life of a parent. We hypothesized that parental bereavement increases the risk of hospital admission for a psychiatric disorder, especially for affective disorders.…

Experience with neonatal palliative care consultation at the Medical College of Wisconsin-Children's Hospital of Wisconsin

At Children's Hospital of Wisconsin there is a pediatric palliative care consultation service that serves a diverse patient population, including infants. However, the value of a palliative care consultation for infants has not been well evaluated.…

Tags: 2001, Backlog, Hospitals, Humans, Infant, Intensive Care Units, Journal Article, Journal of Palliative Medicine, Leuthner SR, Neonatal, Neonatology, Newborn, Palliative Care, Pediatric, Pierucci R, Referral And Consultation, Retrospective Studies, Wisconsin

Perinatal loss. A critique of current hospital practices

Dramatic improvements in the hospital management of perinatal loss have taken place in the past 20 years. However, there has been no critical examination of current approaches. Four possible hazards of current hospital practice are described: 1)…

Differences in characteristics of dying children who receive and do not receive palliative care

OBJECTIVE: Comparing demographic and clinical characteristics associated with receipt of palliative care (PC) among children who died in children's hospitals to those who did not receive PC and understanding the trends in PC use. METHODS: This…

Adult education program in palliative care for nursing facility physicians: design and pilot test

Nursing facilities (NF) are important sites for the care of dying patients. Curricula likely to improve end-of-life care are needed for NF physicians. To this end, a model medical school palliative care curriculum was modified for experienced NF…

Parent and clinician preferences for location of end-of-life care: Home, hospital or freestanding hospice?

BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We…

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…

Reviewing audit: barriers and facilitating factors for effective clinical audit

OBJECTIVE: To review the literature on the benefits and disadvantages of clinical and medical audit, and to assess the main facilitators and barriers to conducting the audit process. DESIGN: A comprehensive literature review was undertaken through a…

Neonatal Death In The Emergency Department: When End-of-life Care Is Needed At The Beginning Of Life

The death of a neonate is devastating for all involved. Each year, critically ill neonates present to emergency departments across the United States. These infants require acute medical interventions with a goal of stabilization. Despite these…

Tags: 2016, Clinical Pediatric Emergency Medicine, Emergency Department, Emergency Medical Care, Fetuses, Hospitals, Intensive Care, Jessica T Fry, Mortality, Natalia Henner, Neonatal Bereavement, Neonatal Death, Newborn Babies, November 2016 List, Palliative Care, Stillbirth

Aspects and intensity of pediatric palliative case management provided by a hospital-based case management team: A comparative study between children with malignant and nonmalignant disease

Objectives: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children�s university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for…

A qualitative study of health care professionals’ views and experiences of paediatric advance care planning

Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health…

Hospital for the children

2006

Tags: 2006, Attitude Of Health Personnel, Backlog, Cancer Care Facilities/organization & administration, Child, England, Hospital Planning/organization & administration, Hospital/organization & administration/psychology, Hospitals, Houlston A, Humans, Journal Article, Nurse's Role, Nursing Staff, Nursing Standard, Oncologic Nursing/organization & administration, Pediatric Nursing/organization & administration, Pediatric/organization & Administration, PedPal Lit

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…

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

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…

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

Evaluation of patient-care protocol use by various providers

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…

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…

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…

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…

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…

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…

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

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…

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…

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.

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 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…

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…

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…

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…

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

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…

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