"A period of limbo": The experience of being a male family member of a person in a prolonged disorder of consciousness (PDoC); an Interpretative Phenomenological Analysis.

Male family members of people with prolonged disorders of consciousness face profound emotional challenges as they navigate uncertainty, search for meaning, and engage with the care system. Interviews with six men in the UK reveal three key themes: the emotional journey of facing the unknown, finding meaning and moving forward, and the landscape of care. The men describe efforts to build resilience and make sense of their situation. The findings suggest that healthcare professionals should adopt a family-oriented approach that provides understanding, compassion, holistic support, and collaborative care.

Study at a glance

Abstract

Prolonged Disorders of Consciousness (PDoC) are complex conditions characterised by sustained consciousness impairment lasting over four weeks following sudden-onset severe brain injuries. These conditions pose emotional and social challenges for family members. This study aims to enhance understanding of the lived experiences of male family members dealing with PDoC in the UK. Semi-structured interviews were conducted with six adult male family members, and Interpretative Phenomenological Analysis (IPA) revealed three Group Experiential Themes: (1) "Facing the Unknown: The Emotional Journey"; (2) "Finding Meaning and Navigating Forward"; and (3) "The Landscape of Care". The findings highlight the emotional challenges faced by male family members and their efforts to find meaning, resilience and navigate the care pathway. Insights for professionals include the need for a family-orientated approach that offers understanding, compassion, holistic support and collaboration in care.