Abstract

To investigate the prevalence and predictors of psychological distress in adolescent and young adult (AYA) cancer patients and their parent caregivers. In a cross-sectional study design, AYA participants (n = 196) and parent caregivers (n = 204) were recruited from 18 sites across Australia. AYAs were aged 15-25 years at cancer onset and within 6-24 months of diagnosis. AYAs and parents completed a survey that includes validated measures of psychological distress (anxiety, depression, and posttraumatic stress symptoms [PTSS]). Additional measures included validated and study-specific questionnaires related to sociodemographic and medical information, social supports, cancer impacts, and life stressors. Nearly half the sample (48% AYAs and 42% parents) scored above a clinical cutoff score for PTSS, indicating further assessment was warranted. Nearly one third of AYAs and parents (31% AYAs and 28% parents) reported moderate to severely elevated symptoms of anxiety and depression. Factors associated with elevated AYA distress included female gender, less social support, and self-image and identity issues. For parents, living outside the metropolitan area, other life stressors, and impact on plans for the future and broader family were factors associated with increased distress. Despite numerous studies of AYA cancer survivors, very few studies have examined the psychosocial and psychological impacts of cancer when onset occurs during adolescence and young adulthood. Almost no studies have examined the impacts on their parent caregivers. The findings of this study support the need for early identification of psychological distress, appropriate developmental perspectives to understand AYA distress, and the need for family-based psychological assessment and interventions.

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