Introduction:
Allogeneic stem cell transplantation is a key therapeutic option for hematologic diseases such as leukemia and lymphoma. However, chronic Graft-versus-Host Disease (cGVHD) affects up to 50% of transplant recipients, significantly impacting their quality of life. Despite its clinical relevance, the psychological and social dimensions of cGVHD remain underexplored.
Purpose:
This study aimed to investigate the lived experience of individuals affected by cGVHD and their caregivers, focusing on the psychological, relational, and existential implications of living with a complex and chronic condition.
Method:
We conducted six in-depth interviews with cGVHD patients (4 males, ranging from 25 to 60 years) and one online focus group their six caregivers. The research followed the Interpretative Phenomenological Analysis framework, using semi-structured interviews to explore illness narratives, coping strategies, and unmet needs. The session with caregivers was conducted online.
Results:
Living with chronic Graft-versus-Host Disease entails identity ambiguity and an elusive diagnostic moment, experienced as a persistent emotional strain. Fragmented care pathways force patients into exhausting mediation roles, amplifying anxiety and practical as well as financial burdens. Daily management revolves around invisible rituals that sustain a precarious balance between illness and normality, while time perception and professional identity are profoundly disrupted. Caregivers, though central to care, remain unsupported and often invisible in their suffering. Meaningful relationships with healthcare professionals and peers emerge as crucial resources to reduce isolation and promote psychological resilience.
Conclusions:
This study highlights the need for integrated psychosocial care within the management of cGVHD. Health psychologists can support both patients and caregivers through interventions aimed at emotional regulation, identity reconstruction, and engagement. Promoting continuity of care, peer support networks, and caregiver inclusion are crucial to enhancing resilience, autonomy, and overall well-being in chronic illness contexts.