A qualitative evaluation of the National Expert Team regarding the assessment and diagnosis of deafblindness in Sweden

Abstract

Deafblindness is a rare condition with multiple causes. Given its rarity, professionals generally have limited knowledge of this condition and insufficient experience managing it. Accordingly, in Sweden, a National Expert Team was established to assess and diagnose deafblindness. The aim of this study was to identify the conceptions of persons with deafblindness, parents of children with deafblindness and professionals involved in their care, rehabilitation and education regarding their participation in the assessment and diagnostic procedures performed by this national team. A phenomenographic design was employed. The main findings were illustrated by five descriptive categories: An opportunity for improvement in daily living, ability to interact with the cream of the crop, personal effort, effects of genetics beyond drawing blood and limited professional interaction.