Experiences of guilt and shame in patients with familial hypercholesterolemia: A qualitative interview study

Abstract

Objective To explore patients’ experiences of guilt and shame with regard to how they manage familial hypercholesterolemia. Methods We interviewed 40 men and women diagnosed with heterozygous familial hypercholesterolemia. Data were analyzed by systematic text condensation inspired by Giorgi's phenomenological method. Results Participants disclosed their condition as inherited and not caused by an unhealthy lifestyle. They could experience guilt or shame if they violated their own standards for dietary management, or if a cholesterol test was not favorable. Participants had experienced health professionals who they felt had a moralizing attitude when counseling on lifestyle and diets. One group took this as a sign of care. Another group conveyed experiences of being humiliated in consultations. Conclusion Patients with familial hypercholesterolemia may experience guilt and shame related to how they manage their condition. Health professionals’ counseling about lifestyle and diet may induce guilt and shame in patients. Practice implications Health professionals should be sensitive to a patient's readiness for counseling in order to diminish the risk of unintentionally inducing guilt and shame in patients.