Caregivers of people with disorders of consciousness: Relationship continuity and rupture

ObjectivesThis study seeks to better understand caregivers’ experience of the support their loved ones, with disorders of consciousness, receive in a dedicated unit.MethodsThe focus here is on the qualitative component of a larger study that also includes a quantitative component. An inductive and iterative approach was privileged, i.e., one similar to grounded theory; a thematic analysis was used to analyze 20 comprehensive semi-structured interviews.ResultsThree main themes emerged: the discovery of a new world by a patient's loved ones, i.e., the disorders of consciousness; the psychological and somatic impact on loved ones; and the relationships between family caregivers and professionals of the dedicated unit.DiscussionThe new living situation of people in an disorders of consciousness state of consciousness requires caregivers to engage in an intense psychological process. First, this is necessary to understand the situation and its consequences. Second, it allows them to cope with the reorganization of the emotional and relational ties between the patient and the caregiver, and in the entire family dynamic. Lastly, healthcare professionals consider that caregivers are also the witnesses of the patient's past life, capable of linking the past and present, and often the interpreters of patients’ emotional reactions according to their former personality.ConclusionCaregivers are affected by the frailty and somatic dependence of their loved ones, and they also bear the history and psychological continuity of patients. Professionals must take into account this double burden, which helps explain families’ psychological exhaustion and their need for help. Understanding these phenomena is crucial for improving patient care in dedicated units.