Living in Limbo: An Exploration of Family Caregiver Experiences of Individuals withProlonged Disorders of Consciousness

<p dir="ltr">Systematic Literature Review</p><p dir="ltr">Prolonged Disorders of Consciousness (PDoC) following brain injury present profound challenges for family caregivers (FCGs). While the emotional and psychological impacts of caregiving are well documented in other chronic conditions, the unique experiences of supporting individuals in PDoC remain underexplored. This qualitative systematic review synthesised research exploring the lived experiences and psychosocial impact on FCGs. A systematic search identified eight eligible studies, representing 111 FCGs across diverse care contexts. Using inductive, interpretative narrative synthesis, six key themes were developed: navigating loss in the presence of life; anticipatory and complex grief; balancing hope and reality; ethical struggles and moral dilemmas; shattered selves–the personal cost of caregiving; and from struggle to strength–resilience and meaning in caregiving. FCGs described emotional liminality, disrupted identities, ethical uncertainty, and shifting hopes. Findings highlight the need for psychologically informed services that recognise ambiguous loss, FCG identity shifts, and long-term emotional strain.</p><p dir="ltr">Empirical Project</p><p dir="ltr">This study explored the lived experiences of UK-based FCGs of individuals with PDoC, focusing on psychological adjustment and meaning-making. Five participants took part in semi-structured interviews, analysed using Interpretative Phenomenological Analysis. Five themes were developed: the grief that lingers: love, loss, and living in limbo; living in the inbetween: uncertain selves and lost futures; caring without question: gendered expectations and emotional strain; invisible in the system: absent support and unacknowledged roles; and no map – just survival. Participants’ accounts illustrated the chronic, relational, and systemic dimensions of psychological adjustment in PDoC caregiving, as well as the emotional labour involved in surviving ongoing uncertainty. The findings extend existing understandings by highlighting psychological adjustment as a relational, ongoing, and contextually embedded process. An adapted conceptual framework is proposed to guide future research and inform clinical support for FCGs.</p>