Mixed Methods Trajectory Analysis of Daily Educational and Social Experiences of Youth With Cancer From Diagnosis to Early Survivorship.

Abstract

Background: Youth with cancer may face acute and long-term academic and social challenges. Most existing research has relied on cross-sectional or single-informant methods to describe these challenges. This longitudinal, convergent mixed-methods study aimed to characterize academic and social challenges faced by youth with cancer, from the perspective of youth, caregivers, and educators-from onset of diagnosis into survivorship.

Methods: Seventy-five triads of youth (M_age = 9.07 years, SD_age = 3.15 years, range 5-14 years), caregivers, and educators completed a Perceptions Questionnaire across three timepoints: at diagnosis (T1), mid-treatment (T2), and one-year post-treatment (T3). Higher ratings indicated greater perceived impact on school attendance, medical issues, teacher knowledge, social issues, and academic performance. A subset of fifteen triads also participated in semi-structured Waking Day interviews at parallel timepoints. A convergent analysis involving mixed modeling using questionnaire data and trajectory analysis by three qualitative coders characterized patterns of change and compared diagnostic groups.

Results: Significant disruptions were observed at T1, which mostly improved over time (p < 0.001). Academic and social concerns persisted for those with brain tumors or who were female. Caregivers and educators consistently expressed concern about long-term academic impact, while youth showed decreasing concern compared to caregivers and educators (b = 0.61, SE = 0.26, p = 0.02 and b = 0.76, SE = 0.31, p = 0.02). Qualitative responses generally suggested more difficulties than questionnaire data and provided additional context.

Conclusions: Results affirm the importance of ongoing needs assessment for youth with cancer through multiple methods. Findings also may inform tailored psychosocial and educational interventions to enhance the quality of life for youth affected by cancer and their families.