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Parents of children with non-malignant life-limiting conditions frequently accept roles that exceed the conventional activities of parenting in relation to the intensity, complexity and temporal nature of the family caregiver experience. This paper…
BACKGROUND: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these…
Objective: To understand the lived experience of healthcare workers who provide palliative care to adolescents and young adults living with advanced cancer. Methods: Interpretative phenomenological analysis was the design of this study. Hospice…
BACKGROUND: The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described. METHODS: Parents of children aged ≥2 years…
PURPOSE: Adolescents and young adults (AYA) with cancer require highly individualized, age-specific end-of-life care. This study identified the characteristics of AYA patients with cancer receiving home-based palliative care and explored their unique…
Background Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers. Aim To describe the availability of PC services in paediatric oncology centres across Europe, and to…
Purpose This study investigated parents' perception of their needs and those of their children with cancer at the end-of-life period, including unmet needs and their expectations regarding providers. Design and methods This cross-sectional study…
BACKGROUND: Internationally, early integration of palliative care in pediatric oncology has been widely recognized. However, little is known about the perspective of Chinese providers in this regard. OBJECTIVE: The aim of this study was to explore…
Background: Despite the advances in cancer care, a subset of children with cancer will be sent for home-based palliative care. Challenges faced by the family during home-based palliative care are not studied in the Indian context. The purpose of this…
A recent measure was developed to assess the Quality of Life (QoL) of young people with advanced cancer and is available for parents and professionals (Advance QoL). The present study aimed to elaborate self-reported versions for children and…
Background: Cancer is still the leading cause of non-accidental death in childhood, although the majority of children diagnosed in high-income countries survive their illness. In accordance with international standards, equal and early access to…
Background Globally, children with cancer often experience delays in palliative care referral or are infrequently referred. Therefore, we conducted a qualitative study to gain insight from paediatric oncologists into what enables or deters palliative…
Background: Our knowledge about the attitudes of healthcare staff to palliative care in pediatric oncology is scarce. We aimed to assess their perceptions of palliative care in Hungary and find answers to the question of how to provide good…
Background: Palliative care in the Philippines is categorized as 3A, considered to have localized hospice care provision; however, lack of education and awareness are dismal and accounted as the biggest challenges for the health care providers and…
Neonatal palliative care is a specialized area within children's palliative care, which focusses on the needs of infants with life-limiting or life-threatening conditions. Nearly one quarter of global neonatal deaths occur in India, where neonatal…
Parents of children with cancer provide paediatric palliative care (PPC). However, the activities they perform remain underexplored, especially in low- and middle-income countries (LMICs) where the care heavily relies on family involvement. The aim…
OBJECTIVES: The goal of this implementation study was to describe the implementation and evaluation of the impact of an online pediatric palliative care training program in Nepal, using the Project ECHO model. METHODS: The study used mixed methods,…
This scoping review aimed to provide an overview of the current landscape of pediatric palliative care in Latin America, including policies, regulations, available resources, challenges, barriers, and evidence-based recommendations. We conducted a…
Background: The pediatric palliative care (PPC) sets up an interdisciplinary approach of chronic complex diseases throughout birth to adolescence. It encompasses countless contrasts in development and diagnosis scopes, which make this area a…
BACKGROUND: Although most children with cancer die in low- and middle-income countries, palliative care receives limited attention in these settings. This study explores parents' perspectives on experiences and needs of children dying from cancer.…
Pediatric palliative care is a holistic care of children suffering from life-threatening or life-limiting illnesses and encompasses care of a child's body, mind, and spirit and involves giving support to the family. According to the Global Atlas of…
Background: Palliative care is one of the primary rights of children with cancer and their families. Identifying the unmet needs of palliative care for these children is important in providing high-quality care. Objectives: The present study aimed to…
Abstract Introduction: Perinatal palliative care (PPC) is a rapidly growing and essential reproductive health care option for pregnant persons with a diagnosed life-limiting fetal condition who continue their pregnancy. The provision of PPC is within…
Objectives This study aims to validate the Palliative and Complex Chronic Pediatric Patients QoL Inventory (PACOPED QL), a new quality-of-life (QoL) assessment tool for pediatric palliative patients with complex chronic conditions. The goal is to…
Background/Objectives: Off-label drug use is prevalent in pediatric care, particularly in pediatric palliative care (PPC), due to the scarcity of pediatric-specific formulations and clinical trials. Differences in perception between healthcare…
Abstract Palliative care for children with neurological conditions is essential to improve their quality of life and that of their family, given their uncontrollable symptoms and associated disabilities. These conditions include genetic diseases,…
Abstract Background: This study aimed to identify barriers to paediatric palliative care provision at one Palestinian paediatric hospital, elucidate reasons for the barriers, provide recommendations for enhancing care and identify topics for future…
Abstract Background: The PalliPed project is a nationwide, observational, cross-sectional study designed with the aim of providing a constantly updated national database for the census and monitoring of specialized pediatric palliative care (PPC)…
Introduction: Patients managed in the Pediatric Palliative Care Integral Unit (PPCIU) have serious neurological conditions that involve significant damage at central nervous system level. The movement disorder is a very common clinical problem and…
Background: To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual…
Abstract: Background: Palliative care has recently become imperative in child care. Pediatric nurses need to boost their education in this area to be able to offer proper care for children with critical illnesses. Purpose: To determine the effect of…
OBJECTIVE: To identify factors associated with the receipt, completion, and goals of palliative care birth plans during the prenatal period. DESIGN: Retrospective observational study of medical record data. SETTING: Midwestern U.S. quaternary…
Background: Pediatric palliative care (CPP) is defined as active and holistic care of the child's body, mind and spirit, actively supporting the centrality and role of the family. They have as their primary objective the improvement of the quality of…
Integrative practices have been incorporated into palliative care to provide holistic and multidimensional care for patients. This study aims to identify the scope of integrative practices, specifically whole medical systems, and demonstrate its…
BACKGROUND/PURPOSE: Despite the prevalence of surgical intervention in seriously ill children, data is scarce regarding interventions performed based on type of serious illness. We therefore sought to evaluate the surgical interventions performed…
AIM: To develop a family-centred end-of-life care protocol and evaluate its feasibility. DESIGN: The draft protocol was created by integrating literature review results and existing protocols and interviewing bereaved parents. A Delphi study and an…
BACKGROUND/OBJECTIVES: Patients with life-limiting conditions (LLCs) often suffer from restlessness, spasticity, pain, and seizures. Dronabinol (DRB) may have a relieving effect; however, data on the effectiveness of DRB in children with LLCs are…
BACKGROUND: The current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community…
BACKGROUND: The number of children who require palliative care has been estimated to be as high as 21 million globally. Delivering effective children's palliative care (CPC) services requires accurate population-level information on current and…
Pediatric palliative care (PPC) patients are at an elevated risk of malnutrition. Nutritional inadequacy can also cause micronutrient deficiencies. These factors can lead to weight loss, stunted growth, and poor quality of life. Despite the…
