Upplevelser av och förväntningar på vården i Region Skåne bland patienter med Ehlers-Danlos syndrom – En kvalitativ intervjustudie

Sammanfattning: Introduction: Ehlers-Danlos syndrome (EDS) is a group of hereditary diseases that affect the body’s connective tissue. It presents with many different symptoms, the most common being stretchy skin, hypermobility and chronic pain. EDS-patients often experience mistrust and disbelief in their encounters with healthcare personnel. A specialized healthcare unit was established at Skåne University Hospital in Lund in 2022 to ensure quality care for these patients. Aim: The aim of this study was to increase knowledge and understanding of EDS-patients experiences of encounters with the healthcare in Skåne and of their expectations of the new specialized unit in Lund. • How do patients with Ehlers-Danlos syndrome experience the encounter with the healthcare in Skåne? • What are the expectations among patients with Ehlers-Danlos syndrome on the new specialized unit that has opened at Skåne University Hospital? Method: Nine participants with a diagnosis of EDS were interviewed using a semi structured interview guide. The interviews were recorded and transcribed and then analyzed using qualitative text analysis. Results: Two main themes and seven categories were identified. Participants in this study experience dismissal and mistrust in their encounter with healthcare workers in Skåne. Lack of knowledge about EDS and difficulties in receiving proper care was experienced. This has led to poor trust in the healthcare in Skåne. With the new specialized unit participants expect a higher level of knowledge regarding EDS and wish continuous support even with a diagnosis. They expect cooperation between the new specialized unit and primary care clinics to improve the care of patients with EDS. Conclusion: Previous experiences of being mistreated and not receiving proper care has led to poor trust in the healthcare in Skåne. Expectations regarding the new specialized unit reflect their poor experiences and participants expect a better healthcare for patients with EDS.