Using the Extended Health Belief Model to understand siblings' perceptions of risk for hereditary hemochromatosis §

Abstract Objective This research focuses on individuals’ reactions to news that a sibling has been diagnosed with hereditary hemochromatosis (HH). We used the Extended Health Belief Model (EHBM) to frame our analysis of siblings’ perceptions of risk for HH and decision of whether to obtain diagnostic testing. Method 60 patient and 25 sibling interviews were transcribed and thematically analyzed for the six components of the EHBM. Results Patient and sibling reports of siblings’ perceptions were categorized into the six components of the EHBM: susceptibility, severity, benefits, barriers, cue to action, and self-efficacy. Conclusion In the case of HH, siblings’ perceptions of HH are varied and include a range of motivators and barriers that may impact family-based detection. Family-based detection can often play an important part of effective public health strategies to address inherited risk of disease. Further research should examine the EHBM with other genetic conditions. Practice implications This analysis using the EHBM suggests areas of importance for message development for both medical personnel and HH patients to promote diagnostic testing of at-risk siblings.