OBJECTIVE: To reveal the experience of family members after learning their child would adopt palliative care., METHOD: Phenomenological research on Heidegger's perspective. The participants were eleven family members of children who were recommended…
While race and ethnicity have been acknowledged as determinants of health, there remain gaps regarding their effects on experiences of paediatric care. This scoping review examines empirical literature regarding the state and experience of paediatric…
Summary The care of critically ill neonates and pediatric patients can be particularly emotionally and ethically challenging. Emerging evidence suggests that we can improve the patient, family, and care team experience in the critical care setting…
For the first time since he was born, we looked at our son as a baby who had withstood endless medical interventions. Rather than taking each new diagnosis in stride, we stopped to reflect. [...]
Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric…
BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited,…
OBJECTIVES: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support…
OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative…
BACKGROUND: Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and…
Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early…
BACKGROUND: Parents of dying children face unique challenge and expect compassionate support from health care providers (HCPs). This study explored the experiences of the parents and HCPs about the end-of-life care and breaking bad news and related…
The purpose of this article is to explore factors that influence pediatric patients and their parents during provider-led goals-of-care conversations. Our framework can help providers enhance holistic communication by approaching difficult topics…
Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We…
BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that…
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established,…
Background: Bereaved parents value receiving support from their children's health care teams. Pediatric residents are important members of the teams that care for children at end of life and can play a meaningful role in communication with bereaved…
Pediatric palliative care aims at improving the care and quality of life of children who are terminally ill or have a fatal prognosis. In the hospital setting, end-of-life decisions and treatments are common in intensive care units. This is why the…
Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We…
acial and ethnic inequities are well documented in medicine (1). Patients from historically marginalized groups have consistently reported medical mistrust, poor communication, and perceived discrimination as barriers to the care that they receive…
Technological advancements and rapid expansion in the clinical use of extracorporeal life support (ECLS) across all age ranges in the last decade, including during the COVID-19 pandemic, has led to important ethical considerations. As a costly and…
Research in Parental Perspectives are pivotal in gaining understanding of parents' experiences, issues, concerns and attitude in pediatric palliative care which affects their decision making. However only a limited number of such studies have…
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…
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by…
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in…
Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and…
Child maltreatment and end-of-life care independently represent two of the most emotion-laden and uncomfortable aspects of pediatric patient care. Their overlap can be uniquely distressing. This review explores ethical and legal principles in such…
The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support…
Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and…
BACKGROUND: Parents of dying children face unique challenge and expect compassionate support from health care providers (HCPs). This study explored the experiences of the parents and HCPs about the end-of-life care and breaking bad news and related…
Communication is essential to providing family-centered care in pediatric oncology. Previously, we developed a functional model of communication between parents and clinicians. Prior research has not examined the domains and purposes of communication…
Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect…
AIM: To investigate the main factors which facilitate or hinder end-of-life decision-making (EoLDM) in neonates and children. METHODS: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71…
OBJECTIVES: To know the experiences of nurses in neonatal intensive care units in the face of the process of communicating bad news to the family of newborns in palliative care. METHODS: Study with a descriptive qualitative approach, in which 17…
BACKGROUND: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are…
OBJECTIVE: Living with a child with a life-limiting condition (LLC), for which there is no hope of cure and premature death is expected, places much stress on a family unit. Familial communication has the potential to serve as a buffer when children…
OBJECTIVES: Numbers are rising of chronically and critically ill, technology-dependent children, who are admitted to paediatric intensive care units (PICUs). An integrated model of care (IMOC), that combines paediatric critical care and primary…
Children with End Stage Lung Disease (ESLD) are part of the growing population of individuals with life-limiting conditions of childhood. These patients present with a diverse set of pulmonary, cardiovascular, neuromuscular, and developmental…
OBJECTIVES: Children with medical complexity (CMC) have an increased risk of adverse events after hospital discharge. Authors of previous studies have evaluated discharge communication practices with primary care providers (PCPs) in adults and…
OBJECTIVE: To implement an "Empathy Workshop" focused on improving Neonatal Intensive Care Unit (NICU) health care provider communication skills. METHODS: Staff-led, small group "Empathy Workshops" were conducted over a 2 year period. NICU parents…
