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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…
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…
Outcomes: 1. Participants will be able to demonstrate knowledge about the gaps in parental bereavement support. 2. Participants will be able to describe the feasibility and process of implementing a community-based expressive arts bereavement…
Abstract Background: Understanding why children die is important for grieving parents and for informing system improvements aimed at prevention and future care. Many countries have child death review (CDR) process, but little is known about how best…
Abstract Introduction: Hospital-based supports for families following the death of a child are rare. Virtual interventions may address key barriers to providing bereavement care, but little is known about their acceptability, feasibility, and…
Background Parents of neonates with life-threatening conditions and professionals, bear the burden of making complex decisions. Parents may not be fully involved in decision-making, and there is a paucity of evidence regarding the influence of social…
SESSION TITLE: Pediatric Potpourri SESSION TYPE: Original Investigations PRESENTED ON: 10/06/2024 01:30 pm - 02:30 pm PURPOSE: Non-invasive ventilation (NIV) is increasingly used in children with life-limiting conditions (LLCs) to treat their…
Trisomy 18 syndrome, also known as Edwards syndrome, is the second most common autosomal chromosome syndrome after Down syndrome. Trisomy 18 is a serious medical disorder due to the increased occurrence of structural defects, the high neonatal and…
Background: Patient and Public Involvement (PPI) is an important component of healthcare research. Conducting PPI within paediatric palliative care research requires specific ethical and practical considerations. Regular reviews of PPI activity are…
Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each…
OBJECTIVE: To investigate the perspectives of experienced parents regarding guidelines and personalisation for managing imminent extremely premature births (22-26 weeks gestational age (GA)) . The study examined four scenarios: no guideline, a…
Abstract The purpose of this study is to investigate out-of-pocket non-medical expenses and employment-related outcomes in families of children with life-limiting conditions, specifically, to quantify the financial and employment implications of two…
Background: The prevalence of complex chronic conditions (CCC), which cause serious limitations and require specialized care, is increasing. The diagnosis of a CCC is a health-illness transition for children and their parents, representing a…
Importance: Pediatric advance care planning (ACP), which aims to ensure care is aligned with family goals and values, is associated with better end-of-life outcomes; however, ACP in pediatrics remains uncommon. Objectives: To determine the…
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…
Background and Objectives Parents of children with medical complexity (CMC) experience high levels of stress and adverse mental health outcomes. Pediatric medical traumatic stress (PMTS) could be an important contributor that has not yet been…
Context: Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they…
The diagnosis of a child’s complex chronic illness may impact family relationships and cohesion. The Impact on Family Scale (IFS) is an instrument used to assess the parental perception of the effects of children’s chronic illness on family life.…
INTRODUCTION: Mortality is prioritized in critical care studies, and is invariably a component of composite outcomes. Composites, such as ventilator-free days, combine mortality with other outcomes, such as duration of mechanical ventilation (MV).…
Purpose When a child needs a hematopoietic stem cell transplant, the seriousness of the child's illness is highlighted. The purpose of this study was to explore parents' experiences of the transplantation process when two children in the family are…
Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric…
Outcomes: 1. Utilizing single-case design and graphical analytic approaches, participants will self-report the ability to investigate prospective small-sample trends in anxiety symptom trajectories, individual variation over time, and clinically…
The post-intensive care syndrome (PICS) concept whereby the ICU experience of the patient as well as their family can have long-term deleterious health outcomes in both the patient and the family provides a rationale and impetus for modifying the ICU…
Extract I. INTRODUCTION The case of Indi Gregory is the last of a series of high-profile judgments regarding the end-of-life for terminally ill children. Such cases have typically generated wide controversy among scholars, practitioners, the general…
Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the…
Background: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an…
Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations…
Background/objectives: Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However,…
Aim: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. Methods: Audio-recorded face-to-face interviews were…
Kim, aged 3 years, lies asleep, waiting for a miracle. Outside her room, the nurses on the night shift pad softly through the half-lighted corridors, stopping to count breaths, take pulses, or check the intravenous pumps. In the morning, Kim will…
Aim: The role of parents in decision-making concerning their child's end-of-life care is not clearly defined. Their participation is encouraged by ethical reflection, in particular by the CCNE (French National Ethics Advisory Committee), but laws are…
The patient's perspective is an essential component of understanding the individual experience of suffering in children with palliative needs, but it is a perspective that is often overlooked. The aim of this study was to compare the perception of…
Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual…
Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the…
To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a…
Research Framework: In serious illness, the proliferation of therapeutic possibilities often delays the moment when death is foreseen and when palliative care, too often associated with the end of life and death, is introduced into patients’ care…
