BACKGROUND: Palliative care necessitates questions about the preferred place for delivering care and location of death. Place is integral to palliative care, as it can impact proximity to family, available resources/support, and patient comfort.…
OBJECTIVES: To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication. METHODS: An exploratory qualitative design was…
To assess current practice and provide a basis for a provincial template, clinicians at a Canadian pediatric hospice reviewed the literature surrounding pediatric advance care planning (pACP) documentation, process, and implementation for…
BACKGROUND: Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of…
Children with medical complexity (CMCs) represent a subgroup of children who may have congenital or acquired multisystemic disease. CMCs are frequently predisposed to respiratory problems and often require long-term mechanical ventilation (LTMV). The…
The primary moral commitment of medical care has traditionally been based on a belief in the intrinsic value and significance of human life and a desire to protect the most vulnerable from harm. In this respect, the care of newborn infants who are at…
Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with…
When a severe diagnosis is made before or after birth, perinatal palliative care (PPC) can be provided to support the infant, parents and involved healthcare providers. An integrative and systematic overview of effectiveness and working components of…
With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical…
The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric…
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study…
Advances in neonatal care have pushed the limit of viability to incrementally lower gestations over the last decades. However, surviving extremely premature neonates are prone to long-term neurodevelopmental handicaps. This makes ethics a crucial…
Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's…
Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT…
Abstract Chronic life-limiting illnesses such as chronic kidney disease (CKD) require integral support to the families concerned in addition to medical care. Palliative care is an option to facilitate families to address future concerns, such as…
BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition,…
OBJECTIVE: To describe COVID-19 deaths among children and adolescents in Sergipe, Brazil. METHODS: Ecological study of all COVID-19 reported cases and deaths occurring in children and adolescents
Project ECHO (Extension of Community Healthcare Outcomes) is an innovative model of online education which has been proposed to enhance access to palliative care in resource-limited settings. There is limited literature describing how health care…
Background: Most children needing palliative care (PC) live in low- and middle-income countries. In Colombia, pediatric palliative care (PPC) knowledge among healthcare professionals (HCPs) is lacking as PPC is not included in the educational…
This study aimed to explore and provide an in-depth insight into the experience and perceptions of parents to children with cancer at the end of life (EOL). A sample of 15 parents of children (aged 2-18) with cancer participated in semi-structured…
BACKGROUND: Providing access to pediatric palliative care (PPC) for children living with a serious illness, such as cancer, is of critical importance, although this specialized intervention, as a novel concept, still seems vague and complicated. The…
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…
Narrative medicine is introduced and explored as a potential tool for developing competency in medical training, including reduction of burnout, sustaining empathy, and allowing for reflective practice. Developing cultural humility, communication…
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…
This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on…
There are various legal considerations and rare decisions of courts in western countries concerning palliative care and the border of viability in cases of extremely preterm babies. Nevertheless, on the one hand, regulations and decisions of courts…
BACKGROUND: Play is central to children's lives. Children living with palliative care needs experience disruption in their play. In this study, we sought to discover the characteristics and patterns of children's play when receiving care in…
An estimated one in six children in the United States suffers from a mental disorder, including mood, anxiety, or behavioral disorders. This rate is even higher in children with chronic medical illness. This manuscript provides a concise review of…
Perinatal loss may deeply affect the attachment relationships of mothers and their next-born children. The aim was to explore the subjective perceptions of mothers, who had fetal death during the first pregnancy, and their adult subsequent firstborn…
PURPOSE: To examine the experiences of parents who are caring for a child with a life-threatening or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope, and self-efficacy to determine if there are significant variations…
BACKGROUND: Most children needing palliative care (PC) live in low- and middle-income countries. In Colombia, pediatric palliative care (PPC) knowledge among healthcare professionals (HCPs) is lacking as PPC is not included in the educational…
Children’s needs in pediatric palliative care (PPC) are complex and are determined by age, the course of the disease, family structure, and cultural background [1]. The child’s family system also has multiple needs which must be properly assessed and…
Examining reported costs for Children with Medical Complexity (CMCs) is essential because costing and resource utilization studies influence policy and operational decisions. Our objectives were to (1) examine how authors identified CMCs in…
BACKGROUND: Children's hospices provide a range of family-centred care services, including bereavement support. Not all hospices provide specific services for grandparents. AIM: To explore how a hospice-based bereavement support group supported…
Background: Approximately half of children receiving palliative care are under age five; however, there are a few studies exploring palliative care interventions for this population. The purpose of this study was to evaluate the effects of Reiki on…
INTRODUCTION: Palliative care involves management of medical, psychological, mental and social symptoms of children with life-threatening illnesses. AIMS: The article describes the organization and function of a multidisciplinary palliative care…
BACKGROUND: This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between need fulfilment and grief. Possible…
INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation…
