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Background Assisting young children when a parent faces a life-limiting illness presents significant challenges. Healthcare professionals play a crucial role in engaging them, and yet the impact of such interactions on the professionals themselves…
Background Palliative Care in the Intensive Care Unit (ICU) is a new field, with significant advances being made in the past 15 years . These include the establishment of Compassionate Extubation (CE) guidelines, especially since the COVID-19…
This manuscript explores the integration of participatory hermeneutic ethnography in research with children with complexity, particularly those who communicate differently. Traditional research methods often exclude these children, leading to a lack…
Background and aims: Surveyed families of children and young adults with cancer who participated in a pilot study of three coordinated telehealth visits (triad of patient/family, hospital clinician, and hospice nurse) during the first month of…
Objective: To examine i) how ethical frameworks can be used in concrete cases of parent-doctors' disagreements for extremely preterm infants born in the grey zone to guide such difficult decision-making; and ii) what challenges stakeholders may…
Background: Congenital heart disease CHD is a common congenital anomaly with lesions requiring intervention before initial hospital discharge defined as critical CHD CCHD. Advances in prenatal detection, surgical, and post-operative care have…
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…
INTRODUCTION: Most children with medical complexity have to live with home mechanical ventilation (HMV). Undertaking the care of a child with HMV creates a psychosocial burden on parents. This study investigated the impact of selected potential…
Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child’s QoL, less is known about parents’ experiences of their own QoL. The aim of…
There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to…
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…
Portugal has approximately 8,000 children with life-limiting conditions. A need to psychological support has been identified, so an innovative online intervention study for families was developed. The aim is to explore potential effects of three…
The traumatic death of a child may cause a wide range of emotional and behavioral responses in parents. In contrast to the extensive research and literature on the negative aspects of parental bereavement, the topic of post-traumatic growth in…
Background Since 1998, the Accreditation Council for Graduate Medical Education has highlighted the importance of teaching palliative care skills, yet neonatology fellows sometimes receive varied and inadequate training on these topics. As this study…
For any expectant mother, the worst possible outcome of pregnancy is for the baby to die. The experience can lead to various forms of physical and psychosocial morbidity. The purpose of this study was to gain in-depth understanding of the experiences…
While grandparents are often a valuable resource in home-based pediatric end-of-life care, they may also experience psychological consequences when faced with their grandchild's illness and death. In this qualitative study, we performed…
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…
Purpose: The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South. Method(s): Semi-structured interviews were conducted with parents of children who died of…
Background: Advance Care Planning (ACP) enables patients and relatives to define and share values, goals and preferences for future medical treatment and care. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT), developed in the…
AIM: To study Swedish pediatric oncologists' practical and emotional experiences of referring, including and/or treating children in early-phase clinical trials. METHODS: A nationwide study was conducted using a mixed-method approach. Structured…
The literature widely supports the benefits of early integration of palliative care into pediatric oncological care; however, many barriers to its successful integration remain. Integrating palliative care as early as possible in the oncology pathway…
CONTEXT: Parent-clinician communication is essential for high-quality end-of-life (EOL) care in children with cancer. However, it is unknown how parent-clinician communication affects parents' experience in the first two years after their child's…
Honoring a child's legacy is an essential aspect of meaning-making for bereaved parents, yet little is known about storytelling as a mechanism. Through narrative analysis of 19 bereaved parent interviews focused on legacy, we examined the role of…
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: 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…
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…
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…
BACKGROUND: Compassion is a crucial aspect in the management of pediatric oncology patients as it has the potential to enhance nurse satisfaction levels, thereby further enhancing the quality and safety of the care they deliver. This study aimed to…
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…
Objective: Describe the healthcare utilization in the last 60 days of life in pediatric patients with cancer who died at home under hospice care and those that died in the hospital. Methods: Retrospective chart review of the medical records of those…
BACKGROUND: Research on concurrent parent and patient-reported outcomes has primarily focused on reaching agreement. However, little is known about how to interpret and address discrepancies, which are not uncommon, between both viewpoints.,…
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…
Latinx children with cancer in the United States (US) are more than 50% more likely to die of their cancer compared to non-Latinx White children. Despite this disproportionate likelihood, little is known about the grief experiences of Latinx…
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…
