Integrated Psychological Services in Pediatric Oncology: Caregiver Perspectives at Diagnosis

Abstract

Background/objectives: Pediatric oncology patients and families are at risk for increased distress at diagnosis. The New Oncology Program in Psychology (NOPP) aligns psychological care with the established standards of care at diagnosis. This project aimed to evaluate NOPP and understand the differences between caregivers' perceptions of feeling informed and prepared to navigate psychosocial concerns for those who did and did not receive psychological services at diagnosis.

Methods: A survey was administered via a virtual platform. Frequency analyses summarize caregiver experiences and concerns. Mann-Whitney U tests assess the differences in caregiver knowledge and preparedness between caregivers who did and did not receive psychological services.

Results: Caregivers reported difficult emotions at diagnosis and expressed concern for the impact of diagnosis and treatment across broad domains of patient functioning. Caregivers of patients who received psychology consultation felt more informed about difficult emotions and how these may change over time. They felt more prepared and equipped with strategies to manage difficult emotions. Caregivers of patients who completed a cognitive assessment also felt more informed and prepared regarding the potential effects of the diagnosis and treatment on patient cognitive/academic functioning.

Conclusions: Psychological services were associated with caregivers' positive perceptions surrounding the management of difficult emotions and with their knowledge regarding the cognitive/academic impact. The results inform the ongoing modification of NOPP.

Keywords: anticipatory guidance; psychoeducation; psychosocial care of children with cancer and their families; psychosocial concerns; universal assessment and intervention.

Figure 1

Caregiver concerns at diagnosis.