Passages of cancer caregivers' unmet needs across 8 years.

Abstract

Identifying and addressing caregivers' unmet needs have been suggested as a way of reducing their distress and improving their quality of life. However, the needs of family cancer caregivers are complex in the period of long-term survivorship in particular because they may diverge as the patients' survivorship trajectory does, and that is what this study investigated. Family cancer caregivers completed prospective, longitudinal surveys 2, 5, and 8 years after diagnosis (n = 633). Early caregiving characteristics and demographics were measured at 2 years. Caregiver status (former caregivers-remission, current caregivers, and bereaved caregivers) and unmet needs were measured at 3 assessments. Caregivers' unmet needs at 8 years were attributable to the passages of the caregiving status as their patients' illness trajectory diverged from the initial state of receiving care. Specifically, either prolonged caregiving or having a break from caregiving followed by bereavement during long-term survivorship was related to various domains of unmet needs at 8 years (t > 2.35, P < .02). Early perceived caregiving stress also predicted all domains of unmet needs at 8 years (t > 2.50, P < .02). Unmet needs at 8 years were the highest across the 3 assessment time points (F > 37.51, P < .001). The caregiving status trajectory over 8 years was a substantial predictor of family caregivers' unmet needs at the 8-year mark. Findings provide guidance for the development of evidence-based programs and patient/caregiver-centered care policies to reduce the unmet needs of family caregivers, which reflect the diverse trajectories of cancer caregivership, many years after the diagnosis of their patients.