The shared experience of adolescent and young adult cancer patients and their caregivers.

ABSTRACT

OBJECTIVE: We examined the interdependent, dyadic, mental health of adolescent and young adult (AYA) cancer patients and their caregivers. Our aims were as follows (1) to investigate the degree to which patients' and caregivers' subjective perceptions of illness severity are congruent with objective severity (i.e., medical indicators), (2) to compare patients' and caregivers' subjective perceptions of illness severity and cancer-related posttraumatic stress symptoms (PTSS), and (3) to evaluate whether subjective perceptions of illness severity are linked to patients' and caregivers' cancer-related PTSS. METHODS: The AYA cancer patients (n = 110; ages 12-24 years; 52% male) undergoing active treatment at an outpatient clinic and their caregivers (n = 110; 97% parents; ages 24-68 years; 89% female) independently reported their PTSS and subjective illness severity. RESULTS: Overall, neither patients' nor caregivers' reports of subjective illness severity were associated with objective illness severity. Caregivers reported higher PTSS than did patients and higher illness severity than younger, but not older, patients. Actor-partner interdependence model analyses indicated that AYA patients' subjective illness severity is the strongest predictor of their own PTSS and is a significant correlate of their caregivers' PTSS. Caregivers' subjective illness severity is associated with their own PTSS only. Results remained robust after controlling for demographic and illness characteristics. CONCLUSIONS: The AYA patients' and caregivers' illness perceptions are distinct from each other and from objective medical indicators of illness severity. Patients' reports of subjective illness severity may be a marker for their own and their caregivers' mental health. Patient care and efficacious psychosocial interventions may require consideration of both patients' and caregivers' subjective perceptions of illness severity.