Living with a Rare Chronic Illness: A Phenomenological, Systemic Examination of Hemophilia Complicated by an Inhibitor

Up to 20% of individuals with hemophilia experience the added complication of an inhibitor. An inhibitor results in severe bleeds, joint damage, impaired mobility, and even death. We conducted a focus group with eight individuals affected by inhibitors (three patients and five caregivers). Data were analyzed using the immersion/crystallization method. The following themes emerged: (a) fear and anxiety within the family, (b) social isolation of the patient, (c) unique impacts on caregivers and siblings, and (d) desired changes in treatment. Similar experiences may be common across comparable disorders that are incapacitating, acute, and relapsing in nature.