Snaman, Jennifer M.

AbstractBackgroundBereaved parents experience life‐long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial distress, have improved outcomes. Identifying the factors associated with bereaved parents' early social functioning can guide future supportive interventions.MethodsThe authors surveyed parents of children who died from cancer at two large centers 6–24 months after death, assessing bereavement experiences using validated and pilot tested tools. Univariable and multivariable logistical regression models were used to examine which family and child demographic, treatment, and end‐of‐life (EOL) factors were associated with maintained parental social functioning (T scores ≥40 on the Patient‐Reported Outcomes Measurement Information System Ability to Participate in Social Roles and Activities‐Short Form questionnaire).ResultsOne hundred twenty‐eight parents of 88 children participated (38% household response rate); most parents identified as female (63%) and White (88%). Parents' median age was 47 years (interquartile range, 10 years); and the median time from the child's death to survey completion was 13 months (interquartile range, 10 months). In multivariate modeling, parents without household material hardship and those who felt prepared for EOL circumstances had increased odds of maintained social functioning (odds ratio, 4.7 [95% confidence interval, 1.6–13.7; p < .004] and 5.5 [95% confidence interval, 1.9–15.9; p < .002], respectively).ConclusionsParents who felt prepared for their child's EOL and those without household material hardship were more likely to have maintained social functioning in the first 2 years after their child’s death. Interventions targeting EOL preparedness and alleviating household material hardship may improve bereavement outcomes.

This Viewpoint dismantles the notion of a “good death” in pediatrics using quotes from bereaved parents and provides actionable alternatives to improve quality end-of-life care for dying children and their families.

Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children, adolescents, and young adults with cancer has resulted in improved outcomes in patients and their families. The field of pediatric palliative oncology—encompassing primary palliative care provided by the multidisciplinary oncology team as well as subspecialty palliative care provided by the palliative care team for more complex cases—is unique from palliative care in adults given its focus on care of the child and the larger family. In this review, we focus on advancements in the specific domains within pediatric palliative oncology care including family-centered communication, assessment and management of physical symptoms and distress, psychosocial concerns, and spiritual considerations of the patient, parents, and siblings.