The lived experiences of work and health of people living with deaf-blindness due to Usher syndrome type 2

ABSTRACT

Purpose: This study aimed to explore lived experiences with working life from the perspective of people with deafblindness due to Usher syndrome type 2 (USH2).

Background: A limited number of studies have explored working life of people with Usher syndrome. One study of individuals with USH2 showed that work active reported significantly better psychological health compared to non-working individuals.

Methods: Seven participants aged 38–50 years with USH2 participated in interviews analysed by interpretative phenomenological analysis.

Results: The analyses yielded four themes showing that work is a source of satisfaction and a commitment that needs to be balanced. It is also associated with facing limitations and feelings of uncertainty.

Conclusion: Based on the psychology of work model we have demonstrated that work is associated with social connectedness, self-determination and a source of improved health outcomes. There are however also potential health hazards in people with USH2, indicating a need for balance between individual needs and resources, and an adapted environment, for maintaining or regaining health for actively working people with USH2.

KEYWORDS:

• Deafblindness
• interpretative phenomenological analysis
• Usher syndrome type 2
• qualitative study
• work

Acknowledgments

We want to acknowledge the participants in this study for their generosity in sharing their working and health-related experiences with us.

Ulf Johansson and Anna Bengtsson for transcribing the interviews,

Librarian Margareta Landin for assistance with references,

Helena Claesson for technical assistance in revising the text.

Disclosure statement

All authors declare that they have no conflicts of interest.

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 PhD with a 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.

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.

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.

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.