Figure 1.

Thematic schema. Participants felt that their ability to take control of their health was influenced by how prepared they were financially and was hindered by the unpredictable nature of their disease symptoms (indicated by the solid lines). Participants often felt that they were conflicted in whether or not they wanted to be tested for polycystic kidney disease (PKD). This decisional uncertainty (indicated by the dotted lines) was prompted by the uncertainty in participant symptoms, whether they felt capable of seizing their health, how they anticipated the impact on PKD on the quality of their life and whether or not they had support and autonomy in their decisions. ADPKD, autosomal dominant polycystic kidney disease.