"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.
Neuropsychological rehabilitation – June 02, 2025
Source: PubMed
Summary
Male family members caring for loved ones with severe brain injuries face unique emotional challenges while navigating an uncertain future. Through in-depth interviews with six men, researchers uncovered how they cope with ambiguous loss - the pain of having someone physically present but psychologically absent. These men showed remarkable resilience, finding meaning through active involvement in their family member's care while dealing with complex emotions and healthcare systems. Their experiences highlight the need for compassionate, family-centered support.
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.