“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

This thesis explores the multifaceted challenges faced by families dealing with acquired brain injury (ABI) and prolonged disorders of consciousness (PDoC) in the United Kingdom (UK). Comprising of three key papers, this investigation aims to contribute to a comprehensive understanding of the impact on families and the ways in which they made sense of and cope with this situation. The literature review and the empirical paper have been prepared for submission to the journal, Neuropsychological Rehabilitation. Author Guidelines are listed in Appendix B.1. Paper one, a literature review, examines experiences of ambiguous loss in UK families affected by ABI, as despite the significant implications of ABI for individuals and their families, there is limited literature on this topic, and professionals may lack a nuanced understanding of these ABI-related challenges. Through a comprehensive review, twelve high and moderate quality studies were analysed, revealing two central themes: Characteristics of ambiguous loss and coping with ambiguous loss. Synthesising existing literature, theories, and guidance this paper offers valuable insights into the unique nature of ambiguous loss in the UK context, aiming to enhance understanding and support for affected families. Paper two presents an empirical study on the experiences of male family members of loved ones with PDoC in the UK. Recognising the limited literature on this complex and challenging experience, semi-structured interviews were conducted with six adult male family members. Interpretative Phenomenological Analysis (IPA) revealed three key themes: 1) ‘Facing the Unknown: The Emotional Journey’; 2) ‘Finding Meaning and Navigating Forward’; and 3) ‘The Landscape of Care’. These findings highlight the emotional challenges faced by male family members and their efforts to find meaning and navigate care, underscoring the need for a familyoriented approach that offers understanding, compassion, holistic support, and collaboration in care. Paper three is an executive summary that consolidates the background, rationale, method, key findings, and recommendations of the empirical study. This executive summary aimed to inform and benefit study participants, family members, and professionals working with PDoC, with external feedback on its content and design being considered to improve accessibility.