Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement

Abstract

Objective: Caregivers of terminally ill patients may experience anticipatory grief or low levels of preparedness for the patient's impending death. Both concepts are related to a forewarning of the impending loss. Anticipatory grief has been suggested to be grief work before the loss, which would improve bereavement outcome, but recent studies indicate a negative impact. Hence, this review systematically investigates key issues relating to anticipatory grief and preparedness for the death; definitions, measurement tools, and potential effects on caregiver outcome.

Methods: We used a systematic approach (PRISMA statement). Databases were searched for publications during 1990-2015. Studies on adult caregivers of terminally ill adult patients were included if anticipatory grief or preparedness was assessed by a measurement tool.

Results: Anticipatory grief was captured in the definition "pre-loss grief." High levels of grief and low levels of preparedness during caregiving were associated with poor bereavement outcome such as complicated grief.

Conclusions: The assumptions that grief work before the loss would alleviate bereavement outcome was not confirmed. Thus, the concept of anticipatory grief is questioned. High preparedness was associated with improved caregiver outcome. Additional support should be given to caregivers with pre-loss grief and low preparedness.

Keywords: Anticipatory grief; Bereavement; Caregivers; Forewarning; Pre-loss grief; Preparedness.