Individual and family experiences of loss after acquired brain injury: A multi-method investigation

After a person experiences an acquired brain injury (ABI), there can be grieving for what has been lost. Little is known about the loss felt by relatives of people with ABI. This study investigates concepts of loss among individuals with ABI and their families. Forty participants, recruited from a brain injury charity client pool, took part in a semi-structured interview. Of the participants, 17 were in dyadic relationships (53% spouses, 41% parent/child and 6% sibling relationships). They also completed the Brain Injury Grief Inventory (BIGI; Coetzer, B. R., Vaughan, F. L., & Ruddle, J. A. (2003). The Brain Injury Grief Inventory. Unpublished Manuscript. North Wales Brain Injury Service, Conwy & Denbighshire NHS Trust) as a quantitative measure of loss after ABI. Five main themes emerged from the interviews: loss of person; loss of relationships; loss of activity/ability; loss of future; unclear loss. There were distinct differences qualitatively between individuals and relatives and only two dyads experienced similar loss, but there were no significant differences in loss as measured quantitatively by the BIGI. The differences between relatives’ loss and individuals with ABIs’ loss are discussed. This research suggests that it is important when supporting families to consider individual experiences, because even though the loss originates from the same injury, the loss as experienced may substantially differ among those affected by it.