This site uses Google Analytics to track site traffic and other metrics. If you would like to allow the use of Google Analytics please click Opt In below. This will associate a cookie with your browser.
OBJECTIVE: To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL). METHODS: From July 2018 to July 2019, family…
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…
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…
BACKGROUND: The aim of this study was to explore and clarify the healthcare service utilization of children dependent on medical technology (CMT), and the parental health-related quality of life (HRQOL). METHODS: Participants recruited the primary…
Families caring for children with disabilities face particular challenges and demands compared to those caring for children without disabilities. Evidence suggests that there is considerable variation in how caregivers of children with disabilities…
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…
When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into…
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…
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…
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…
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…
Objectives: This study aimed to examine the symptomatology of patients with advanced cancer at admittance to palliative care services and to investigate how the symptomatology changed during the first month, and whether these changes were associated…
BACKGROUND: The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need.…
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…
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 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 Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While…
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)…
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…
This research was conducted as a descriptive study in order to examine the effects of the moral problems experienced by nurses working in intensive care clinics on their end of life care behaviors. The data were collected using the Moral Distress…
BACKGROUND: Parents often perceive the news that their child has cerebral palsy (CP) as overwhelming and shocking. They are at increased risk of parental stress and mental health problems, which in turn can affect the interaction between the parent…
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…
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.…
Understanding the meaning of loss for racialized immigrant fathers and addressing their experiences in a culturally competent manner is important in an increasingly ethnoculturally diverse country like Canada. Culture, customs and rituals influence…
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…
Context: Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy and autonomy, risking infringement upon their dignity. Yet the concept of dignity in pediatrics remains underexplored relative to the adult…
OBJECTIVE: The objective of the scoping review was to explore the evidence and describe what is known about perinatal bereavement care guidelines provided within health care facilities prior to discharge. Additionally, the review sought to identify…
BACKGROUND: Parents of children with neurodevelopmental disorders often experience heightened levels of parenting stress and diminished well-being. However, less is known about the well-being of parents whose children exhibit symptoms of…
In this article, we investigate how mothers of disabled children in Norway experience the work-family conflict and its impact on their careers, highlighting the role of provision of health and welfare services. We use a qualitative multiple case…
BACKGROUND: Children with invasive mechanical ventilation (IMV) often live at home, but for safety, parents must be prepared to assume primary responsibility for all aspects of their child's medically complex care. Prior studies have described…
Daily experiences of mothers caring for children with Prader-Willi syndrome (PWS) are largely unknown and unvoiced. Knowledge of PWS has generally focused on pathology of the disorder. This emphasis overlooks the challenging moments of everyday life…
