Alexandra Superdock

and 5 more

Background: Spiritual care is recognized as an essential component of standard care for children with cancer and their families. Oncologists lack training in navigating spirituality discussions in primary cancer care. The current landscape of spiritual dialogue during clinical oncology encounters remains understudied. Procedures: This qualitative study aimed to describe the frequency, context, and content of religious and spiritual communication between pediatric neuro-oncologists, caregivers, and patients with brain tumors during disease reevaluation encounters. This study is part of the U-CHAT trial (NCT02846038), a prospective longitudinal investigation of realtime clinical communication across the trajectory of poor prognosis cancer. Patients with brain tumors and their caregivers were eligible if their primary oncologist estimated survival ≤ 50%. All disease reevaluation encounters for enrolled patients were audiorecorded and underwent rapid qualitative analysis to identify, summarize, and synthesize religious and spiritual communication. Results: Religious or spiritual references were identified in 23 (18%) of 129 total encounters. References usually comprised a single religious or spiritual term, with “prayer”-related language representing the majority of references. Caregivers introduced spirituality dialogue more often than oncologists (65% vs 35%). References were most often identified in the context of discussion about an uncertain or uncontrollable future. Conclusions: Results suggest oncologists rarely integrate spiritual care into disease reevaluation discussions. In light of recommendations from multiple consensus groups to integrate spiritual care into cancer care, future work should explore how generalist spiritual care training could better equip oncologists to attend to spiritual needs that arise along the cancer trajectory.

Sarah Daniels

and 5 more

Background: Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end-of-life and during bereavement. Certified Child Life Specialists often provide these services, and presently little is known about whether disparities exist in the provision of legacy-oriented interventions. Methods: In this retrospective decedent cohort study, we examined demographic and clinical characteristics from a sample of 678 pediatric oncology patients who died between 2015-2019. Bivariate analysis assessed differences between patients who received any versus no legacy-oriented intervention. Uni- and multivariable logistic regression models assessed associations of baseline characteristics and likelihood of receiving legacy-oriented intervention. Further multivariable analysis explored joint effects of significant variables identified in the univariable analysis. Results: 52% of patients received a legacy-oriented intervention. Older adolescents (≥13 years) had lower odds (OR: 1.73, p=0.007) of receiving legacy-oriented interventions than younger ones. Patients with Home/hospice deaths showed decreased likelihood (OR: 19.98, p<0.001) compared to patients who passed away at SJCRH locations. Hispanic patients (OR: 1.53, p=0.038) and those in palliative care (OR: 10.51, p<0.001) were more likely to receive interventions. No significant race association was noted. Conclusion: All children and adolescents with cancer deserve quality care at end-of-life, including access to legacy-oriented interventions, yet nearly half of patients in this cohort did not receive these services. By identifying demographic and clinical characteristics associated with decreased odds of receiving legacy-oriented interventions, healthcare professionals can modify end-of-life care processes to improve access. Introducing legacy-oriented interventions early and increasing exposure in community spaces may enhance access to legacy-oriented interventions for pediatric oncology patients.