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The Multiplicity Of Caregiving Burden: A Qualitative Analysis Of Families With Prolonged Disorders Of Consciousness., Laura E Gonzalez-Lara, Sarah Munce, Jennifer Christian, Adrian M Owen, Charles Weijer, Fiona Webster

Brain and Mind Institute Researchers' Publications

Objective: To understand the multiple and sometimes conflicting roles substitute decision makers (SDMs) of individuals in a vegetative state (VS), minimally conscious state (MCS), or with locked-in syndrome (LIS) perform while caring for a loved one and the competing priorities derived from these roles.Methods: We conducted semi-structured qualitative interviews using a constructive-grounded theory design. Twelve SDMs, who were also family members for 11 patients, were interviewed at two time points (except one) for a total of 21 in-depth interviews.Results: Participants described that caregiving is often the central role which they identify as their top priority …