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The lived experiences of work and health of people living with deaf-blindness due to Usher syndrome type 2
Örebro University, School of Health Sciences. The Swedish Institute for Disability Research, Örebro University , Örebro, Sweden; Habilitation and Health, Region Stockholm , Stockholm, Sweden. (Audiological Research Centre)ORCID iD: 0000-0002-8364-1465
Örebro University, School of Health Sciences. Örebro University Hospital. The Swedish Institute for Disability Research, Örebro University , Örebro, Sweden; The Swedish National Resource Centre for Deafblindness, Lund, Sweden. (Audiological Research Centre)ORCID iD: 0000-0002-6965-6820
Örebro University, School of Health Sciences. The Swedish Institute for Disability Research.ORCID iD: 0000-0001-6557-6359
Örebro University, School of Health Sciences. Örebro University Hospital. The Swedish Institute for Disability Research, Örebro University, Örebro, Sweden; University Health Care Research Centre, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.ORCID iD: 0000-0001-7352-8234
2020 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 15, no 1, article id 1846671Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Co-Action Publishing , 2020. Vol. 15, no 1, article id 1846671
Keywords [en]
Deafblindness, Usher syndrome type 2, interpretative phenomenological analysis, qualitative study, work
National Category
Occupational Therapy
Identifiers
URN: urn:nbn:se:oru:diva-87956DOI: 10.1080/17482631.2020.1846671ISI: 000596816700001PubMedID: 33287675Scopus ID: 2-s2.0-85097367366OAI: oai:DiVA.org:oru-87956DiVA, id: diva2:1507920
Funder
Swedish Research Council
Note

Funding Agency:

Swedish Institute for Disability Research, Örebro University  

Available from: 2020-12-09 Created: 2020-12-09 Last updated: 2022-08-26Bibliographically approved

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Ehn, MattiasWahlqvist, MoaMöller, ClaesAnderzen-Carlsson, Agneta

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