Navigating disenfranchised grief: Women's experiences caring for family with brain injury

Abstract

A leading cause of disability, brain injury entails long-term recovery that often necessitates in-home caregiving provided by a spouse, partner, or parent. Women tend to shoulder such caregiving roles, yet few studies investigate the triumphs and obstacles associated with their lived experiences—including counseling and other supports. Anchored in a constructivist tradition aligned with humanistic principles, we utilized narrative inquiry and grounded theory to explore, via interviews, the experiences of 20 women caregivers to family members with brain injury. Our analyses yielded four intersected categories reinforced by a guiding perspective of disenfranchised grief: (1) experiencing dissonance, (2) navigating ambiguous loss, (3) falling in and out of isolation, and (4) losing and reclaiming personal identity. We discuss counselor education and development, individual therapy and psychoeducation, and group considerations.