Upplevelser av kontakten med vården bland patienter med Ehlers-Danlos syndrom – En kvalitativ intervjustudie
Sammanfattning: Background: Ehlers-Danlos Syndrome (EDS) is a hereditary disease that affects the connective tissue of the body. Common symptoms include stretchy and frail skin, hypermobility, joint pain and chronic fatigue, although the disease is associated with many more symptoms. Because of this, the disease often remains un- or misdiagnosed. The interactions between patients with EDS and healthcare professionals has previously been described as inadequate and patients have reported being mistreated. Aim: This study aimed to study experiences of individuals suffering from EDS in their interactions with healthcare professionals, as well as their expectations and desires, by examining the following research questions: ● What experiences do individuals suffering from EDS have of treatment and support from their interactions with healthcare? ● What do these individuals expect and desire from their healthcare? Method: Twelve individuals suffering from EDS were interviewed using a study-specific interview guide. The interviews were transcribed and analysed using qualitative text analysis. Results: Two themes were identified: Treatment from healthcare professionals and One’s own wishes, as well as five categories: Distrust, Knowledge, Support and treatment, Expectations and Continuity. Conclusions: Participants feel that they rarely receive proper treatment and support. They often feel disrespected and distrusted in meetings with healthcare personnel. Knowledge of EDS among healthcare personnel is rare, according to the participants, forcing them to educate healthcare personnel about EDS themselves. Several participants would rather not seek healthcare, as their expectations of Swedish healthcare aren’t met and the stress and exertion of being mistreated is, according to some participants, worse than living with the symptoms. Poor knowledge of EDS among healthcare personnel can be outweighed if the personnel show insight regarding their own knowledge and respect the patient. According to the participants, many issues could be solved through specialist clinics for EDS, more continuity in healthcare, and better general knowledge of EDS.
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