Disorders of consciousness

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.

Background: Disorders of consciousness (DoC) disrupt close relationships. This study investigated the experience of a DoC in the family. Methods: Four main themes were identified from semi-structured interviews with nine females and analysed using Interpretative Phenomenological Analysis (IPA): Findings: (1) Loss without a name, (2) Relationship without a title, (3) Symbiotic relating and (4) Frozen futures. Participants’ accounts showed complex losses and relationship transformations that were challenging to cope with.

Background: The American Academy of Neurology recently emphasized the importance of communicating with patients' families to better reflect patient values in clinical care. However, little is known about how decisions about continuing rehabilitative care made by family caregivers and healthcare providers working with minimally conscious patients are informed by conceptualizations of consciousness and moral status.

Disorders of consciousness (DoC) disrupt close relationships. This study investigated the experience of a DoC in the family. Four main themes were identified from semi-structured interviews with nine females and analysed using Interpretative Phenomenological Analysis (IPA): (1) Loss without a name, (2) Relationship without a title, (3) Symbiotic relating and (4) Frozen futures. Participants' accounts showed complex losses and relationship transformations that were challenging to cope with.