Infants, children and adolescents with life-limiting and life-threatening disease need long-term care that may change according to disease's natural history. With the primary goal of quality of life, the psychologist of pediatric palliative care…
Background/aims: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) represent a group with complex care needs that are met by multiple services and thus may be subject to particular vulnerabilities.
Clinicians face many challenges in caring for children with severe neurological impairment (SNI). This study aimed to understand expert clinician perspectives on the personal impact of caring for children with SNI to highlight the challenges and…
BACKGROUND: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is…
BACKGROUND: The number of patients awaiting organ transplantation is high, particularly in Pediatrics, in which available organs are scarce. To maximize organ donation opportunities and to provide quality end-of-life care, clinicians from all…
In this article, I sort through some of the confusion surrounding what constitutes the controversial notion of a "good death" for children. I distinguish, first, between metaphysical and practical disagreements about the notion of a good death, and,…
Few Korean hospitals had experience in pediatric palliative care. Since the beginning of the national palliative care project, interest in pediatric palliative care has gradually increased, but the establishment of professional palliative care is…
PURPOSE: This study aims to better understand the experiences of mothers of children receiving pediatric palliative care. DESIGN AND METHODS: The qualitative phenomenological method was used to determine the mothers' experiences. The study sample…
Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC…
Over 200,000 patients are admitted into pediatric intensive care units (PICU) annually in North America, exposing families to extreme psychosocial stressors and adverse outcomes. While previous research has shown PICU patients and their parents…
Background and Aims: Pediatric palliative care is concerned with relief of suffering of all children with a life threatening disease and their families in all domains (physical, psychological, social and spiritual). This includes pediatric oncology…
PURPOSE: In the last few decades, interest in palliative care and advance care planning has grown in Brazil and worldwide. Empirical studies are needed to reduce therapeutic obstinacy and medical futility in the end-of-life care of children with…
Background: Dignity Therapy (DT) is a validated psycho-therapeutic intervention designed to influence a sense of meaning and purpose for individuals and their families. DT is well received by patients and family members, with research identifying…
CONTEXT: Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. OBJECTIVE: To describe the design and lessons…
Context. Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. Objective. To describe the design and lessons…
Palliative care, which aims to provide comprehensive, interdisciplinary, holistic care to children, adolescents and adults with life-threatening, and ultimately life-limiting conditions, is a discipline that has emerged as an integral component of…
OBJECTIVES: Children with severe chronic illness are a prevalent, impactful, vulnerable group in PICUs, whose needs are insufficiently met by transitory care models and a narrow focus on acute care needs. Thus, we sought to provide a concise…
Many NICUs have reached an inflection point where infant deaths following limitation of life-sustaining treatments outnumber those following unsuccessful resuscitations, and many infants who survive continue to require intensive supports. Families of…
BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that…
Pediatric palliative care is aimed at pain and symptom management, reducing hospitalization, promoting psychosocial care, and improving quality of life for children with serious illness. As a professional caregiver, nurses play an essential role in…
Children with neurodisability (ND) represent a significant population with a demonstrated need for coordinated support. Patient navigation has a primary focus on: facilitating access to and connection amongst fragmented systems; as well as the…
Background The transition process from paediatric to adult hospice care is uniquely challenging for young adults living with non-malignant life-limiting conditions as they are often declining in health with increasing dependence on their families for…
Abstract The French national centre of palliative and end-of-life care (Centre national des soins palliatifs et de la fin de vie) offers each year an updated selection of nearly 200 children's books for helping adults who accompany children who are…
Background Memory making is the process of creating mementos of a child with a life-limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. Acorns memory making work already…
Context: Children with cancer and cardiac disease suffer with high symptom burden at end of life (EOL). Little is known about the EOL experience for children with other complex chronic conditions (CCCs). Objective(s): To evaluate symptoms and…
Supporting the suffering of caregivers in neonatal palliative care
Accompanying newborns in palliative care remains difficult for professionals. Representations, fears and real difficulties are all factors that put them to the test. Supervision in…
The sudden, unexpected death of a child (SUDC) is a devastating experience. It is vital that supportive and investigative services are effective and promote the best outcomes for families. Analysis of 5 years of data from 309 SUDC cases in Greater…
OBJECTIVES: The purpose of the current study is to suggest a powerful strategy to overcome the misperceptions of undergraduate nursing students' about paediatric palliative care (PPC), through simulation technique. MATERIALS AND METHODS: A one-group…
BACKGROUND: By sharing patient stories, health care professionals (HCPs) may communicate their attitudes, values and beliefs about caring and treatment. Previous qualitative research has shown that HCPs usually associate paediatric palliative care…
Objective In Germany, children with life-limiting conditions and complex symptoms are eligible for specialised outpatient palliative care (SOPC). In the federal state of Hesse, SOPC for children (SOPPC) is delivered by teams with paediatric…
Objective: The role of social workers, who are beginning to be integrated into the entire health system, is now becoming more and more understood. In our study, we aimed to discuss the duties of social workers at PICU, the results of their work in…
The social determinants of comfort describe structural conditions that influence whether, to what degree, and in what forms comfort measures are offered to and accepted by people living with serious illness and their families. The notion of social…
Grief over perinatal loss is a personal experience that has a lasting impact on the life of the surviving siblings. This retrospective study is an in-depth exploration of the symbolic construction of the bond with the lost sibling employing…
The 2002 Dutch Euthanasia law applies to patients aged 12 years and older. Developments in end-of-life care and decision-making in the last decade have sparked the debate about usefulness and necessity to extend euthanasia to include children under…
OBJECTIVES: To examine parents' perceptions of nursing care needs; including specific concerns, preferences and supportive actions for themselves and their dying child during and following the withdrawal of life support in the paediatric intensive…
Objectives: To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with…
Objectives To identify pediatric patient-reported outcomes (PROs) that are associated with chronic conditions and to evaluate the effects of chronic disease activity on PROs. Study design Participants 8-24 years-old and their parents were enrolled…
Sibling relationships are one of the most long-lasting and influential relationships in a human?s life. Living with a child who has a life-threatening condition changes healthy siblings? experience. This scoping review summarized and mapped research…
OBJECTIVES: To describe the characteristics, critical care resource requirements, and outcomes of children who were hospitalized after a Pediatric Intensive Care Unit (PICU) consult in the Emergency Department (ED). METHODS: In this single-centre…
