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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…
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: In the context of pediatric palliative care, where the quality of life of children with life-limiting or life-threatening conditions is of utmost importance, the integration of health technology must support the provision of care.…
Parents who are experiencing neonatal death need support in promoting and maintaining their parental role. This includes parenting their infant during end-of-life. Bedside nurses should partner with parents to help them maintain the parent-infant…
OBJECTIVES: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals. DATA SOURCES: Multidisciplinary author group, international expert opinion, and use of current literature. DATA SYNTHESIS: We…
An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and…
As medical students and residents, we have all grappled with patient death and dying at some point in our training. These experiences often remain with us, informing our clinical practice, our personal wellbeing, and the ways in which we build…
Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's…
Background: Despite the number of interprofessional team members caring for children at the end of life, little evidence exists on how institutions can support their staff in providing care in these situations. Objective: We sought to evaluate which…
OBJECTIVE: We sought to understand how healthcare professionals (HCP) conceptualise spirituality among seriously ill children and young people (CYP) and their families, and their experiences in dealing with spiritual issues that emerge in practice.…
BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. OBJECTIVE: (i) Describe the problems and hopes reported by…
