Living With Acquired Haemophilia: Patients' and Relatives' Experiences - A Single-Centre Study

BackgroundAcquired haemophilia (AH) is a rare and potentially life-threatening bleeding disorder characterised by sudden onset, unpredictable bleeding, and complex treatment. Despite its severity, little is known about how patients and their relatives experience life with the illness.AimTo describe the experiences of daily life among patients with AH and their close relatives.MethodsA qualitative study using thematic analysis was conducted. Interviews were performed with 12 patients diagnosed with AH and six relatives recruited from one European Haemophilia Comprehensive Care Centre (EHCCC). Data were analysed inductively following Nowell's six-phase approach.ResultsThe overarching finding was the experience of loss of control and the subsequent need to regain normality. Three main themes were identified: Experiencing loss of control, Adaptations in everyday life, and Finding strategies to obtain normality. Participants described persistent uncertainty, fear, and unmet informational needs, which contributed to ongoing distress even after clinical recovery. AH disrupted identity, daily routines, and family roles, requiring continuous adaptation. Support from family and healthcare professionals was essential, although participants reported insufficient or delayed support. Strategies to regain control included reframing the illness, gradually rebuilding trust in the body and relying on medical follow-up.ConclusionsThis study highlights the impact of AH on both patients and relatives, emphasising the need for improved knowledge, structured support, and greater involvement of relatives in care. Increased contact with the EHCCC may enhance understanding, reduce uncertainty, and thereby strengthen illness management. A more coordinated approach is needed to ensure adequate support throughout the illness trajectory.