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…
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…
OBJECTIVE: To describe our institutional experience with a four-week pediatric HPM elective rotation and its impact on residents' self-rated competencies. BACKGROUND: In the spirit of bolstering primary hospice and palliative medicine (HPM) skills of…
ObjectiveFamily psychosocial risk screening is an important initial step in delivering evidence-based care. The Psychosocial Assessment Tool (PAT) is a brief parent report screener based on the trilevel Pediatric Psychosocial Preventative Health…
OBJECTIVE: To assess the influence of resiliency and stress on parental perspectives of the future quality of life (QOL) of neonatal intensive care unit (NICU) newborns at high risk of neurodevelopmental disability. STUDY DESIGN: We conducted a…
BACKGROUND:: In planning high-quality research in any aspect of care for children and young people with life-limiting conditions, it is important to prioritise resources in the most appropriate areas. AIM:: To map research priorities identified from…
BACKGROUND: Chronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting…
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to…
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to…
While bereavement camps serve as a support for children, this study examines a therapeutic recreation-based camp for families who have lost a child. The study triangulated documents, researcher reflection and staff interviews to highlight the themes…
Genetic disorders are a leading cause of morbidity and mortality in infants. Rapid whole-genome sequencing (rWGS) can diagnose genetic disorders in time to change acute medical or surgical management (clinical utility) and improve outcomes in acutely…
Identification of children with complex chronic conditions (CCCs) is necessary to improve health care delivery and perform clinical research, because this patient population uses significant inpatient and outpatient medical resources.1 The original…
In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in…
Introduction About 4% of all cancers occur in adolescent and young adults (AYA) population in Japan. Quality and intensity of end-of-life (EOL) care in this population vary among different nationalities or cultures. Objectives We aimed to evaluate…
Background: Families caring for a child with a life limiting condition not only provide 24 hour complex care but also must care for siblings and cope with everyday tasks. Research suggests families could benefit from 'domestic support' (Fraser et al,…
Background: One goal of pediatric palliative care is to maintain quality of life for children and their families. Quality-of-life investigations may be enhanced by considering clinically important metrics in addition to statistical significance.…
Context Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs. Objective To determine the levels…
Objectives *Identify 3 barriers to the provision of care in rural areas for children with life-limiting illnesses and their families. *Describe 3 approaches to improving the provisions of care in rural areas for children with lifelimiting illnesses…
BACKGROUND: Advance care planning and goals of care discussions involve the exploration of what is most important to a person, including their values and beliefs in preparation for health-care decision-making. Advance care planning conversations…
Introduction As adolescents with neurodisabilities near adulthood, they and their caregivers will face the challenge of transferring from paediatric to adult healthcare systems. Despite the growing number of programmes designed to support healthcare…
Context: Children in foster care suffer with serious illness at end of life. However, the relationship between prior trauma exposure and serious illness has received little empirical attention.Objectives: The objectives were to examine the prevalence…
Background: "Primary" palliative care (PC) skills for CF care teams are not clearly defined, but in general for serious illness include managing basic physical and emotional symptoms, and having basic discussions about prognosis, goals, suffering,…
Purpose The impact of specialized pediatric palliative care (SPPC) teams on patterns of end-of-life care is unknown. We sought to determine (1) which children with cancer access SPPC and (2) the impact of accessing SPPC on the risk of experiencing…
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…
CONTEXT: Early integration of palliative care (PC) in the management of children with high-risk cancer is widely endorsed by patients, families, clinicians, and national organizations. However, optimal timing for PC consultation is not standardized,…
BACKGROUND: Identifying characteristics of individuals at greatest risk for prolonged grief disorder (PGD) can improve its detection and elucidate the etiology of the disorder. The Safe Passage Study, a study of women at high risk for sudden infant…
Current research demonstrates that pediatric symptom management care is often initiated in the late stages of disease once clinicians are no longer able to meaningfully impact symptom burden. Given that physicians or nurse practitioners are…
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…
BACKGROUND: While the importance of pediatric palliative care (PPC) for children with life-threatening illness is increasingly recognized, little is known about physicians' attitudes toward palliative care for children with heart disease. OBJECTIVE:…
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…
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…
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the…
This study aims to examine perceived challenges, including knowledge, skills, self, and work environment, of professionals in providing pediatric palliative care (PPC) in Hong Kong and the differences in perceived challenges between groups. A total…
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…
This article investigates children's views on providing peer support to bereaved children. The data (pre- and postinterviews and written documents) come from an action research study of a teacher-researcher and her 16 children aged 10-11 years old.…
In Germany, every child with a life-limiting condition suffering from symptoms that cannot sufficiently be controlled is eligible by law for specialized pediatric palliative home care (SPPHC). It is the aim of this study to describe the demographic…
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…
