Life strategies of people with deafblindness due to Usher syndrome type 2a - a qualitative study

ABSTRACT

Purpose: To explore life strategies in people with Usher syndrome type 2a.

Background: There are no studies on life strategies in people with Usher syndrome. People with deafblindness are often described in terms of poor health and low quality of life, or as being vulnerable. From a clinical point of view, it is of importance to balance this picture, with an increased knowledge of life strategies.

Methods: The study had a qualitative explorative design. Fourteen people aged 20–64 years (4 women, 10 men) with USH2a in Sweden participated in focus group interviews, which were transcribed and analysed by qualitative content analysis.

Results: The content analysis resulted in seven categories; remaining active, using devices, using support, sharing knowledge, appreciating the present, maintaining a positive image and alleviating emotional pain. Two sub-themes: resolve or prevent challenges and comforting oneself was abstracted forming a theme “being at the helm”.

Conclusion: The findings show that people with USH2a have a variety of life strategies that can be interpreted as highlighting different aspects of psychological flexibility in a life adjustment process. The study demonstrates that people with USH2a manage in many ways, and metaphorically, by “taking the helm”, they strive to actively navigate towards their own chosen values.

KEYWORDS:

• Deafblindness
• focus groups
• life strategies
• psychological flexibility
• qualitative content analysis
• Usher syndrome type 2

Acknowledgments

We want to acknowledge the participants who shared their experiences with the researchers, Kerstin Möller for help with planning and conducting the interviews, Maria Ekholm-Takman for transcribing the focus group interviews, Librarian Margareta Landin for assistance with references, Helena Claesson in editing the manuscript and Lena Jacobson for sharing her ophthalmologic knowledge

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was funded by the Swedish Institute for Disability Research, Örebro University and The Swedish Research Council.

Notes on contributors

Mattias Ehn

Mattias Ehn is active as a clinical psychologist and doctoral student with a PhD project focusing on health-related biopsychosocial factors in adults with Usher syndrome. His special interest is the association between working life and strategies for managing everyday situations.

Agneta Anderzén-Carlsson

Agneta Anderzén-Carlsson is an RN and associate professor in healthcare sciences. She currently holds the position of researcher and research supervisor in the Örebro County Region, Sweden and is affiliated to The Swedish Institute for Disability Research at Örebro University.

Claes Möller

Claes Möller MD, PhD is professor em at Örebro University. He has been active in deafblind research for more than 30 years. Claes Möller was a member of the research group that localized the first Usher genes. He has been supervisor for 9 doctoral theses on deafblindness and has some 200 scientific publications on ENT, audiology and genetics

Moa Wahlqvist

Moa Wahlqvist, PhD in Disability science with a background as a social worker, is a researcher at the Audiological Research centre, University hospital Örebro, Sweden and an affiliated researcher at the Swedish Institute for Disability Research, School of Health sciences, Örebro University. She also works as a coordinator at the Swedish National Resource Centre for Deafblindness. Her research focuses on health, wellbeing and rehabilitation in a biopsychosocial context for people with deafblindness and their families.