Supporting the Family After the Death of a Child or Adolescent.

Whether death occurs in the context of a chronic illness or as the sudden loss of a previously healthy infant, child, or adolescent, the death of a child is a highly stressful and traumatic event. Psychosocial support for families after the death of a child embodies core medical values of professional fidelity, compassion, respect for human dignity, and promotion of the best interests of a grieving family. The pediatrician has an important role in supporting the family unit after the death of a child through a family-centered, culturally humble, trauma-informed approach. This clinical report aims to provide the pediatrician with a review of the current evidence on grief, bereavement, and mourning after the loss of a child and with practical guidance to support family caregivers, siblings, and the child's community. Pediatricians have an important role in helping siblings and helping families understand sibling needs during grief. Ways for pediatricians to support family members with cultural sensitivity are suggested and other helpful resources in the community are described.

State of the science and future research directions in palliative and end-of-life care in paediatric cardiology: a report from the Harvard Radcliffe Accelerator Workshop.

Workshop proceedings, priorities, and recommendations from the "State of the Science and Future Directions in Palliative and End-of-Life Care in Pediatric Cardiology," a Harvard Radcliffe Accelerator Workshop, are detailed. Eight priorities for research were identified, including patient and family decision making, communication, patient and family experience, patient symptom measurement and management, training and curriculum development, teamwork, family hardships and bereavement, and ethical considerations. Barriers to research in this area were also identified: lack of outcome/measurement tools, lack of research funding, small population sizes, lack of effort/protected time for research, undervalued research topic by field and colleagues, and heterogeneous research participant diversity. Priorities and barriers were mostly consistent with those reported by the field of paediatric palliative care at large. These collective, consensus-based findings from diverse, multidisciplinary leaders in the field, as well as parent representatives, provide a catalyst for scientific advancement specific to paediatric and end-of-life care in paediatric cardiology.

Association Between Children With Life-Threatening Conditions and Their Parents' and Siblings' Mental and Physical Health.

Importance: Despite concerns regarding the potential deleterious physical and mental health outcomes among family members of a child with a life-threatening condition (LTC), few studies have examined empirical measures of health outcomes among these family members. Objectives: To examine whether mothers, fathers, sisters, and brothers of children with 1 of 4 types of pediatric LTCs have higher rates of health care encounters, diagnoses, and prescriptions compared with families of children without these conditions. Design, Setting, and Participants: This retrospective cohort study included US families with commercial insurance coverage from a single carrier. Children who had 1 of 4 LTCs (substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe neurologic impairment) were identified by a diagnosis in their insurance claim data between July 1, 2015, and June 30, 2016. Each case child and their family was matched with up to 4 control children and their families based on the age of the case and control children. Data were analyzed between August 2020 and March 2021. Exposures: Having a child or sibling with substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe and progressive neurologic impairment. Main Outcomes: Rates of occurrence of health care encounters, physical and mental health diagnoses, and physical and mental health medication prescriptions, identified from insurance claims data, were compared between case and control families using a multivariable negative binomial regression model. The statistical analysis adjusted for observed differences between case and control families and accounted for clustering at the family level. Results: The study included 25 528 children (6909 case children [27.1%] and 18 619 control children [72.9%]; median age, 6.0 years [IQR, 1-13 years]; 13 294 [52.1%] male), 43 357 parents (11 586 case parents [26.7%] and 31 771 control parents [73.3%]; mean [SD] age, 40.4 [8.1] years; 22 318 [51.5%] female), and 25 706 siblings (7664 case siblings [29.8%] and 18 042 control siblings [70.2%]; mean [SD] age, 12.1 [6.5] years; 13 114 [51.0%] male). Overall, case mothers had higher rates of the composite outcome of health care encounters, diagnoses, and prescriptions compared with control mothers (incident rate ratio [IRR], 1.61; 95% CI, 1.54-1.68), as did case fathers compared with control fathers (IRR, 1.55; 95% CI, 1.46-1.64). Sisters of children with LTCs had higher rates of the composite outcome compared with sisters of children without LTCs (IRR, 1.68; 95% CI, 1.55-1.82), as did brothers of children with LTCs compared with brothers of children without LTCs (IRR, 1.70; 95% CI, 1.56-1.85). Conclusions and Relevance: In this cohort study, mothers, fathers, sisters, and brothers who had a child or sibling with 1 of 4 types of LTCs had higher rates of health care encounters, diagnoses, and medication prescriptions compared with families who did not have a child with that condition. The findings suggest that family members of children with LTCs may experience poorer mental and physical health outcomes. Interventions for parents and siblings of children with LTCs that aim to safeguard their mental and physical well-being appear to be warranted.