Background: 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.
Methods: 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.
Results: 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).
Conclusions: 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.
Keywords: bereavement; caregivers; long-term survivorship; longitudinal study; prolonged caregiving; unmet needs.
© 2020 American Cancer Society.