Browse Items (237 total)

BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children…

CONTEXT:
Epilepsy is a common and severe neurologic disease associated with increased mortality, seizure-related injury, and adverse psychological and quality-of-life outcomes.
OBJECTIVE:
To describe the perspectives of children and adolescents with…

OBJECTIVE: Approximately 60% of deaths in pediatric intensive care units follow limitation or withdrawal of life-sustaining treatment (LST). We aimed to describe the circumstances surrounding decision making and end-of-life care in this setting.…

OBJECTIVES: Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children,…

OBJECTIVE: This report describes the consensus outcome of an interdisciplinary workshop that was held at the National Institutes of Health in April 2001. The purpose of the workshop and this article are to define the terms "spasticity," "dystonia,"…

Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because…

Program Goals Pediatric residentscare for a wide spectrum of children with acute and chronic disease processes. They are often the first to communicate with families, yet receive little formal training in conveying difficult information. In 2014,…

BACKGROUND: When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in pediatric oncology. We aimed to identify these…

Purpose: Compassion fatigue (CF) is emotional distress experienced by providers from ongoing contact with patients' suffering. Burnout (BO) is personal distress due to uncontrollable workplace factors that manifest in career dissatisfaction. CF and…

There are more migrants, refugees, and immigrants adrift in the world today than at any time in the recent past. Doctors and hospitals must care for people from many different cultures, countries, and religious backgrounds. We sometimes find our…

OBJECTIVES: This study aimed to learn about experiences of Mexican American and Chinese American families who require pediatric palliative care. This article describes parents' perceptions of information-sharing by health care providers during their…

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…

OBJECTIVE: The growing shift toward home care services assumes that "being home is good" and that this is the most desirable option. Although ethical issues in medical decision-making have been examined in numerous contexts, home care decisions for…

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…

Twenty-four families who had participated in a Home Care Program for children terminally ill with cancer and 13 families of similar children who had died in the hospital completed inventories on parent and sibling personality as well as family…

BACKGROUND: Children with complex chronic conditions (CCCs) might benefit from pediatric supportive care services, such as home nursing, palliative care, or hospice, especially those children whose conditions are severe enough to cause death. We do…

For centuries, many physicians and parents assumed that it was ethically justifiable to lie to a dying child. The reasoning was clear. Because the lie would likely eliminate or prevent a concrete harm (the child's fear), and the lie is about a harm…

In 2006, hospice and palliative medicine (HPM) became an officially recognized subspecialty. This designation helped initiate the Accreditation Council of Graduate Medical Education Outcomes Project in HPM. As part of this process, a group of expert…

Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their…

Children with complex chronic conditions (CCCs) and their families deserve high-quality pediatric palliative care (PPC) throughout their illness trajectory, including at end of life (EOL). Standard EOL quality measures (QM) have only recently been…

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…

BACKGROUND: Children with complex chronic conditions (CCCs) require a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care. METHODS: We performed a retrospective…

Abbreviations:EOL — end of lifePPC — pediatric palliative careThe importance of pediatric palliative care (PPC) for children with cancer has been broadly embraced over the last 2 decades in response to compelling evidence of high symptom burden and…

BACKGROUND: Many adult patients with cancer who know they are dying choose less intense care; additionally, high-intensity care is associated with worse caregiver outcomes. Little is known about intensity of end-of-life care in children with cancer.…

The question of optimal disposition for children with complex medical and social circumstances has long challenged the well-intentioned clinician. The coronavirus disease 2019 pandemic created unique difficulties for patients, families, and health…

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…

BACKGROUND AND OBJECTIVES: To provide support to parents of critically ill children, it is important that physicians adequately respond to parents' emotions. In this study, we investigated emotions expressed by parents, physicians' responses to these…

OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking…

Objective. Neonates and infants have the highest death rate in the pediatric population, yet there is a paucity of data about their end-of-life care and whether a palliative care service can have an impact on that care. The objective of this study…

CONTEXT: Children with incurable cancer may participate in research studies at the end of life (EOL). These studies create knowledge that can improve the care of future patients. OBJECTIVE: To describe stakeholder perspectives regarding research…

Those in hospitals and health care systems, when designing clinical programs for children with medical complexity, often talk about needing to develop and implement a system of risk stratification. In this article, we use the framework of an ethical…

Introduction The specialty of Pediatric Palliative care and Hospice is growing exponentially, however, residency training programs are often underprepared to meet the evolving educational needs of their trainees with regards to the field. While…

* Abbreviations: IRB — : institutional review board PPC — : pediatric palliative care Patient- and family-centered care “is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a…
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