%0 Journal Article
%T Partially dead, partially separated: establishing the mechanism between ambiguous loss and grief reaction among caregivers of patients with prolonged disorders of consciousness
%A Arie Altman
%A Einat Yehene
%A Maya Elyashiv
%A Yael Zaksh
%J Clinical Rehabilitation
%@ 1477-0873
%D 2019
%R 10.1177/0269215518802339
%X To trace the psychological mechanism underlying caregivers¡¯ emotional experience in prolonged disorders of consciousness, by examining the mediating role of boundary ambiguity in the relationship between ambiguous loss and grief. Cross-sectional design. The Respiratory Rehabilitation Division of a long-term medical and rehabilitation institute. A total of 64 primary caregivers (69% female) of patients in a vegetative state (n£¿=£¿49) or minimally conscious state (n£¿=£¿15), with a mean age of 55.5 (SD£¿=£¿12.3)£¿years. Participants were mostly the patient¡¯s children (62%) or partners (27%). The mean caregiving duration was 4.9 (SD£¿=£¿5.1)£¿years. The Boundary Ambiguity Scale, the Revised Need for Closure Scale, an adapted version of the multifactor Two-Track Bereavement Questionnaire, and a sociodemographic questionnaire, which included items regarding caregiving: frequency of visits and perception of the patient¡¯s psychological presence. (1) Caregivers¡¯ grief scores (total TTBQ: mean£¿=£¿2.97; SD£¿=£¿0.55) did not significantly differ from those exhibited by a normative bereavement sample. (2) Time since injury did not affect caregivers¡¯ grief scores (three-year cut-point; P£¿>£¿.05). (3) Mediation analyses revealed that boundary ambiguity (mean£¿=£¿34.03; SD£¿=£¿7.55) significantly mediates the relationship between need for closure (B£¿=£¿.11; confidence interval (CI)£¿=£¿.04¨C.23) and grief; frequency of visits (B£¿=£¿.05, CI£¿=£¿.02¨C.10) and grief and perception of psychological presence (B£¿=£¿.26, CI£¿=£¿.00¨C.61) and grief in three separate models. Ambiguity concerning relational boundaries hinders caregivers¡¯ ongoing grief reaction and impedes their ability to integrate the loss. High frequency of visits, belief in the patient¡¯s psychological presence and difficulties in tolerating uncertainty are all clinical manifestations of caregivers¡¯ entangled experience
%K Ambiguous loss
%K boundary ambiguity
%K caregivers
%K disorder of consciousness
%K grief
%K minimally conscious state
%K persistent vegetative state
%U https://journals.sagepub.com/doi/full/10.1177/0269215518802339