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.

KEYWORDS:

• Deafblindness
• diagnostic procedure
• dual sensory loss
• phenomenography
• qualitative methods

Acknowledgements

The author wishes to thank the participants in this study who generously shared their experiences at the interviews and Maria Ekholm Takman for excellent transcription.

Disclosure statement

No potential conflict of interest was reported by the author.

Notes on contributor

Agneta Anderzén-Carlsson is a registerd nurse, specialized in pediatric nursing, and associate professor at Örebro University. She is a member of a research-group at SIDR at Örebro University and Audiological Reseach Center at Örebro University Hospital, focussing on a bio-psycho-social perspective on deafblindness.

Additional information

Funding

The research was funded by the National Resource Center for Deafblindness (NKCdb) and by research grants from Stiftelsen Mo Gård.