Browse Items (1086 total)

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…

PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to…

This study investigated the potential of the metaverse in providing psychological support for pediatric and AYA cancer patients, with a focus on those with rare cancers. The research involved ten cancer patients and survivors from four distinct…

PURPOSE: Data on end-of-life care (EOLC) quality, assessed through evidence-based quality measures (QMs), are difficult to obtain. Natural language processing (NLP) enables efficient quality measurement and is not yet used for children with serious…

Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the…

CONTEXT: Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes…

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…

Registered nurses have voluntarily created hand casts for families, providing comfort during challenging moments. Hand casting moves the patient's family and nurses. As requested by parents, staff apply a quick-drying gel to sick children's hands and…

OBJECTIVES: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors…

Adolescents and young adults with cancer (AYACs) have become recognized as a unique group in recent years. The unique developmental context and related challenges of being a young person with a cancer diagnosis can lead to a distinct and diverse set…

Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Cancer in adolescents and young adults is associated with an increased risk for suicidal ideation (SI). There are no reported pediatric oncology cases describing management of SI during end of life. We present the case of a 14-year-old male with…

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 and aims: Telehealth can improve care for patients with progressive cancer enrolling in hospice. Coordinated telehealth visits (patient/family-hospital-hospice) may improve communication, satisfaction with and interdisciplinary hospice…

Background: Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known…

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: In the era of evolving and emerging therapies, adolescents and young adults (AYAs) living with advanced cancer experience a high degree of uncertainty, making palliative care and end-of-life (PCEOL) discussions difficult. Clinical…

Background and objectives: Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery,…

Background: Adolescents and young adults frequently receive chemotherapy near death. We know less about the use of targeted agents and immunotherapy or trends over time. Methods: We conducted a retrospective cohort study of 1836 adolescents and young…

The aim of the article is to evaluate and understand the feelings and attitudes of Brazilian physicians regarding the implementation of palliative care in pediatric patients. Between July 2018 and December 2019, 236 questionnaires were sent to…

Abstract Objective: To describe the perceived wellbeing (pWB) and the psychological characteristics of young people with life-limiting and life-threatening conditions (LLTCs). Methods: We conducted a cross-sectional study in young people aged 8 years…

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…

Abstract Background: Biography writing services are increasingly being used with adult palliative care patients, helping them document their stories in a way that provides meaning for themselves, family, and friends. However, the feasibility of…

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,…

Background: Many academic pediatric centers care for children with medical complexity (CMC) through established complex care and palliative care programs. There are little prior data investigating best practices for collaboration between these two…

OBJECTIVES: This study aimed to explore the multifaceted experiences of families with children and adolescents enrolled in the pediatric palliative care (PPC) program, with a particular emphasis on understanding their perspectives regarding the…

Introduction: Voicing My CHOiCES (VMC) is an advance care planning (ACP) guide designed to assist adolescents and young adults (AYAs) with serious illness in communicating their care preferences to others. This study evaluated a revised version of…

AIM: To qualitatively assess the impact of disability-based discrimination in healthcare on the parents of children with medical complexity (CMC)., METHOD: In this qualitative study, we conducted in-depth, semi-structured interviews with the parents…

Duchenne muscular dystrophy (DMD) is a severe genetic neuromuscular disease that causes progressive loss of muscle function. As life expectancy in DMD has gradually increased to a current median of 21-39 years, the disease serves as an example of…

Background: Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice.…

Background: The role of pediatric palliative care (PPC) is well described in oncology, however, its involvement in children with congenital heart disease (CHD) is not well explored. Method(s): This prospective interventional study was conducted on…
Output Formats

atom, dcmes-xml, json, omeka-xml, rss2