Browse Items (408 total)

Recent high-profile cases have highlighted the difficulties that professionals caring for terminally ill or technology dependent children face. I am a paediatrician. I see children with severe problems, often chronic and frequently without a cure,…

OBJECTIVES: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals. DATA SOURCES: Multidisciplinary author group, international expert opinion, and use of current literature. DATA SYNTHESIS: We…

As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies,…

OBJECTIVES: To describe practical considerations related to discussions about death or possible death of a critically ill child. DATA SOURCES: Personal experience and reflection. Published English language literature. STUDY SELECTION: Selected…

When a child has a life-limiting illness, parental involvement is amplified, having to respond to the increased needs of the child. Both parents are affected by the illness, yet research has largely under-represented fathers' experiences of their…

BACKGROUND: An in-depth exploration of the experience of midlife fathers of developmentally disabled young adults (aged 19-32 years) was motivated by a dearth of research in this area (McKnight, PsyPAG Quarterly, 94, 2015, 10)., METHOD: Five fathers…

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…

Objective There is growing emphasis on health care organizations to ensure that lay people are meaningfully engaged as partners on research teams. Our aim was to explore the perspectives of patients, family members and informal caregivers who have…

BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their…

BACKGROUND: Research found that low levels of professional confidence and personal comfort among neonatal clinicians regarding palliative care may indicate a lack of competence and hesitancy to offer neonatal palliative care services. PURPOSE: This…

The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those…

High quality symptom management for children receiving palliative care relies on accurate and timely documentation of symptoms. Our pediatric palliative and comfort care team (PACT) previously established a mechanism in to assess and document…

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…

BACKGROUND:: About one quarter of children affected with cancer die. For children and their families, the end-of-life period is highly distressing. AIM:: This study focused on how end-of-life care in pediatric cancer patients changed over a period of…

Backgrounds: Many adult patients with cancer who knowthey are dying choose less intense care. High intensity careis associated with worse caregiver outcomes. Little is knownabout intensity of treatment of end-of-life care in children withcancer in…

INTRODUCTION: Parental socioeconomic status has been proposed to have an influence on childhood cancer mortality even in high-income countries. Our study investigated the influence of parental socioeconomic factors on childhood cancer mortality.…

Purpose: Challenges experienced by staff in the Oncology Services Group at Queensland Children's Hospital led to issues with staff retention, well-being, and stress on team culture. Therefore, a customized program was developed through a needs…

Purpose: Around 170 multidisciplinary staff of the Oncology Services Group at Queensland Children's Hospital, Brisbane, care for children with oncology, hematology, and palliative care needs from throughout Queensland and northern New South Wales. A…

Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping…

Background: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief…

BACKGROUND: In the U.S., more children die from cancer than from any other disease, and more than one third die in the hospital setting. These data have been replicated even in subpopulations of children with cancer enrolled on a palliative care…

OBJECTIVE: To understand the existential experience of children with cancer under Palliative Care from the Humanistic Nursing Theory's point of view. METHOD: This is a field and qualitative research, in which eleven children participated, supported…

Palliative care (PC) aims to improve quality of life for patients and their families. The World Health Organization and American Academy of Pediatrics recommend that PC starts at diagnosis for children with cancer. This systematic review describes…

Objective: Quality of Life (QoL) is the core of pediatric palliative care (PPC). The evaluation of QoL allows the adjustment of patient care. However, it remains difficult for clinicians to measure it in this population because there is very little…

Background: Transitioning care for pediatric, adolescent,and young adult (AYA) patients with end-stage cancer tohome hospice care has been challenging in Japan due to the lack of local home-care clinics for daily care and local hospitals for urgent…

Background and context: In DR Congo, many cancer patients in the terminal phase of their condition have minimal access to palliative care. There is a combined effect of poverty, the deteriorationofthe health system and the absenceof a well-defined…

PURPOSE: This study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. DESIGN AND METHODS: This study employed a…

Program Goals: Despite the Liaison Committee for Medical Education (LCME) mandatory requirement for the incorporation of end-of-life care education into medical school curriculum, very few studies have reported successful approaches, and…

Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in…

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…

Background: NICU length of stay (LOS) data revealed patient outliers with significantly longer LOS and concomitant increased risk of mortality. Baseline data revealed under-utilization of Pediatric Palliative Care (PPC) consultative services in this…

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,…

Program Goals: The American College of Critical Care Medicine Task Force, 2004-2005 recommends "family meetings with the multi-professional team begin within 24-48 hours after ICU admission and are repeated as dictated by the condition of the patient…

Program Goals: Historically Child Life Specialists (CCLS) have done the majority of their work in healthcare settings such as pediatric acute care hospitals and clinics. As children are living longer with chronic diseases, CCLS are using their…

BACKGROUND: Dyspnea is one of the most frequent symptoms in children with complex chronic conditions (CCC) requiring palliative care. Although it is a subject of high importance, there has been little research on dyspnea in critically ill children.…
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