ABSTRACT
Background: Neurocognitive deficits from childhood cancer treatment are common, long-standing, and negatively impact multiple domains of life leading to challenges with schooling and education. The purpose of this study is to describe caregiver-reported experiences of neurocognitive effects from therapy and to understand the roles clinicians play in this domain in the United States. Methods: An explanatory mixed-methods study of 174 caregivers of children with cancer provided insight into how clinicians provided information on neurocognitive effects of treatment and their experiences with school-related resources. Clinicians provided descriptions of how they provide this information and assist families with accessing services or transition back to school after therapy. Results: Caregivers identified that physicians, nurses, and social workers primarily provide information regarding neurocognitive effects of treatment. Over half (55.9%) of families seek additional information elsewhere and 49.4% report doing so because the information they received from their team was inadequate. Nearly 40% of caregivers report accessing school supports feels like a constant fight and over 40% were not offered homebound educational services by their school. Qualitative interviews with providers found that clinicians focus on therapy-related physical symptoms of treatment and only discuss neurocognitive effects when prompted by families or when children are returning to school. Discussion: Clinicians' focus on physical symptoms and just-in-time thinking when it comes to providing education or school-related services may explain why families endorse infrequent education on the topic and challenges with school reintegration. Improved education for clinicians on this topic, integration of interdisciplinary teams, and new clinical practice models may improve the family experience.
