Ambiguous loss in family caregivers of patients in a permanent vegetative state: A reflexive thematic analysis

Objectives Family caregiving for individuals in a permanent vegetative state (PVS) represents an extreme form of ambiguous loss characterized by prolonged emotional strain, suspended grief, and profound identity disruption. Despite its complexity, few qualitative studies have examined how families navigate this uniquely challenging condition and construct meaning around it. Methods Adopting a phenomenologically informed, interpretative approach, we conducted semistructured interviews with 13 family caregivers (in northeastern Italy). Data were analyzed via reflexive thematic analysis, following Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. Results Four interconnected themes emerged: (1) “the paradoxical coexistence of presence and absence”; (2) “identity disruption and emergent growth”; (3) “bodily relational practices that sustain emotional bonds and resist biomedical finality”; and (4) “the ‘double face’ of waiting and farewell, spanning ontological and biological loss.” Caregivers described symbolic acts that maintain relational continuity and challenge dominant medical framings of the patient’s body. Significance of results Ambiguous loss in PVS should be understood as a dynamic relational and symbolic process rather than a static burden. Effective support must honor families as active meaning-makers. Clinical practice and policy should integrate narrative and relational ethics to mitigate prolonged grief and enhance caregiver resilience.