AIM: The aim of the study was to determine survival probabilities and life expectancies for individuals with cerebral palsy based on data collected over a 28-year period in California. METHOD: We identified all individuals with cerebral palsy, aged 4…
BACKGROUND: In the terminal stages of neuro-metabolic diseases, parents can begin to experience a sense of loss even before the child dies, and might accept death prematurely. CASES: A 2.5-year-old female patient with Sandoff Disease (diagnosed at 9…
This paper describes a collaborative partnership in developing a children and young persons’ bereavement group. The course consists of a series of four sessions which encourage children to share and express feelings. The group uses a partnership…
Improving symptom management for palliative care patients has obvious benefits for patients and advantages for the clinicians, as workload demands and work-related stress can be reduced when the emergent symptoms of patients are managed in a timely…
Neurologic determination of brain death is a complex assessment that may be misunderstood by nonspecialists and families. Recent guidelines clarify how to proceed with such an examination and are available to physicians, with the time of death in…
OBJECTIVE: To determine the epidemiology of death in PICUs at 5 geographically diverse teaching hospitals across the United States. DESIGN: Prospective case series. SETTING: Five U.S. teaching hospitals. SUBJECTS: We concurrently identified 192…
Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have…
When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into…
Cataplexy is a brief episode of bilateral loss of muscle tone with intact consciousness, triggered by a variety of strong emotions such as anger, laugh, humor or surprise and it is considered to represent the physiologic atonia of rapid eye movement…
Rosengren, Miller, Gutiérrez, Chow, Schein, and Anderson have written a powerful and important monograph focused on the fascinating topic of children's understanding of death. Combining multiple methods, converging data sources, and diverse…
Background: Pediatric palliative care increasingly became integrated into health care institutions worldwide over the last decade. However, in Mexico and other developing countries with large populations of children, little is known regarding the…
The aim of this investigation was to conduct a comprehensive examination of communication between parents and health care professionals (HCPs) in the pediatric intensive care unit (PICU). A secondary analysis was performed on data from 3 previous…
Children with life-limiting and disabling conditions are surviving longer than previously, and many require palliative and supportive care, usually at home. Home-based care can put family life under considerable strain, as parents care for their…
Abstract Background: The majority of young people in need of palliative care live in low- and middle-income countries, where curative treatment is less available. Objective: We systematically reviewed published data describing palliative care…
BACKGROUND: There is currently no published, validated measures available that comprehensively capture quality of life (QoL) symptoms for children with poor-prognosis malignancies. The pediatric advanced care-quality of life scale (PAC-QoL) has been…
Moral distress has been identified in multiple clinical settings especially in critical care areas. The neonatal intensive care unit (NICU) has frequent situations in which moral distress may occur including providing palliative care. The purpose of…
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population…
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population…
While adult palliative care has been gaining wider acceptance, public and pr fessional awareness of the benefits of paediatric palliative care is still lacking. This significant concerns that could be barriers to early and appropriate referral.Poh…
This article presents an original study commissioned by the UK charity, Together for Short Lives which explored children and young people up to 25years of age with life-threatening/limiting conditions and their families. Using Appreciative Inquiry…
Few studies have fully explored the problem of communication barriers in pediatric palliative care, particularly the detrimental effects of poor interaction between staff and families on children's health and well-being. A literature review was…
Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather…
UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries'…
A new group of medically fragile young adults are graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and no comparable adult services to support their complex needs. Accessing this population…
Introduction Being part of a school community, where young people develop peer relationships and experience a sense of their value in society, is integral to childhood/young adulthood. Supporting terminally ill young people to maintain a role within…
Introduction Recruitment in paediatric palliative care is widely reported as challenging, with low rates of invitation by clinicians. The impact of this on sample bias is unknown. Aim(s) and method(s) We studied recruitment to a qualitative interview…
PubMed Central Canada (PMC Canada) provides free access to a stable and permanent online digital archive of full-text, peer-reviewed health and life sciences research publications. It builds on PubMed Central (PMC), the U.S. National Institutes of…
Background and aims Many sources of conflict exist in intensive care units between family’s members, team–family, or within the ICU team. These conflicts are frequents (48%) in adults ICU, and most are in relation to end-of-life decisions especially…
Objectives of this review were to examine definitions and background of palliative care, as well as address whether there is an increased need for palliative care education among neurologists. The review also explores what literature exists regarding…
In the complex patient—doctor relationship, the principle of personal autonomy has gradually acquired more weight against medical paternalism, both in clinical practice and in bioethical thinking. 1 In many countries, this change has been…
Background The death of a baby is recognised as one of the most difficult bereavements with life-long impact for parents. How bereaved parents are cared for influences their grief journey. Optimal holistic care is provided when the physical,…
Aim To identify the spiritual and religious needs of young people with cancer. This article is a summary of findings regarding parents, which are significant in providing holistic care. Method Semi-structured interviews were conducted with young…
INTRODUCTION AND OBJECTIVES: To identify the knowledge of caregivers of pediatric intensive care units (PICUs) on the French law related to patients' rights and end of life, their views on withholding/withdrawing life-sustaining treatment (WWLST)…
Perinatal palliative care as an area of interest in maternal child health began in the 1990s and continues to grow throughout the United States and the world. With this concept of care, families are supported through the pregnancy, birth, and death…
Background: Most pediatric hospice patients receive services from agencies typically oriented to adults. Information regarding how pediatric hospice patients differ from adult hospice patients is lacking. Objective: We aim to assess differences…
Background: There has been a breadth of research on the grief experience of parents following the death of a child. However, the role and impact of hospital-based bereaved services remain unclear. Aim: To identify services offered to bereaved…
