Upplevelser av bemötande vid Ehlers-Danlos syndrom

Sammanfattning: Research shows that individuals who had negative encounters in healthcare had significantly less contact with healthcare. Ehlers-Danlos syndrome is a challenge to diagnose and treat. Studies have shown that individuals with Ehlers-Danlos syndrome for these reasons avoid healthcare with the risk of worsening of their own health, something that can depend on negative encounters. The purpose of this study is to give a descriptive overview of how people with Ehlers-Danlos syndrome experience encounters in healthcare. The research questions are “Do individuals with Ehlers-Danlos syndrome experience good access to healthcare?” and “How do individuals with Ehlers-Danlos syndrome experience encounters in healthcare?” An electronic survey was distributed through social media via Ehlers-Danlos national association in Sweden. The number of respondents was 521 of an estimated number of 814 adult individuals with Ehlers-Danlos syndrome in Sweden. The results show that 477 individuals have experienced offensive or reducing behavior from treating physicians. The majority report bad encounters and low availability in healthcare. The result also shows that it takes approximately 15,28 years to diagnose the condition.