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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…
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…
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…
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…
Objective: To deliver and evaluate an educational intervention to equip health and social care professionals (professionals) on how best to support parents at end of life with cancer concerning their dependent children (
Outcomes: 1. Using a structured approach, participants will self-report the ability to understand the static and dynamic factors that influence treatment decision-making at diagnosis for children presenting with advanced cancer in LMICs. 2.…
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…
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…
OBJECTIVES: Pediatric patients with life-limiting diagnoses frequently seek care in the pediatric emergency department (PED) during times of acute illness, or at end-of-life (EOL) . Although the population of patients with life-limiting diagnoses is…
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…
Background and objective: Children with medical complexity (CMC) have chronic and severe conditions leading to medical fragility. CMC represent less than 1% of children but account for one-third of paediatric healthcare expenditures. Enrollment to a…
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…
AIM: This qualitative study aimed to explore nurses' perspectives regarding the challenges of providing perinatal/neonatal end-of-life care in a regional hospital. METHOD(S): This exploratory qualitative study was conducted with 20 nurses working in…
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…
Background: Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a…
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: To ensure that children with life-limiting conditions (LLC) and their families have access to a palliative care pathway from diagnosis to death and bereavement, a better understanding of the challenges experienced by paediatric healthcare…
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…
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…
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. Discuss how families use perinatal palliative legacy items after they return to the community. 2. Understand how perinatal palliative legacy items can affect deceased infant identity in the family. Key Message: Current literature does…
Outcomes: 1. Participants will be able to define and summarize the major themes characterizing CMC family caregivers' experiences of rest, rejuvenation, and respite and then illustrate examples of those themes from family caregivers' stories. 2.…
Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric…
Outcomes: 1. Identify key actions that help prepare families for the dying process. 2. Consider how the defined key actions may apply to other settings of practice. Key Message: Preparing families for end-of-life symptoms and circumstances may help…
Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is…
Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite…
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…
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,…
Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU. Design: Interpretive description. Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers.…
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…
Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured…
Background: The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to…
Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died…
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…
Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals,…
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…
Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country. Objectives: To…
