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

References

• Bambra, C., & Eikemo, T. A. (2009). Welfare state regimes, unemployment and health: A comparative study of the relationship between unemployment and self-reported health in 23 European countries. Journal of Epidemiology and Community Health, 63(2), 92–12. https://doi.org/10.1136/jech.2008.077354
   PubMed Web of Science ®Google Scholar
• Bambra, C., Lunau, T., Van der Wel, K. A., Eikemo, T. A., & Dragano, N. (2014). Work, health, and welfare: The association between working conditions, welfare states, and self-reported general health in Europe. International Journal of Health Services, 44(1), 113–136. https://doi.org/10.2190/HS.44.1.g
   PubMed Web of Science ®Google Scholar
• Benoit, C., Jansson, M., Jansenberger, M., & Phillips, R. (2013). Disability stigmatization as a barrier to employment equity for legally-blind Canadians. Disability & Society, 28(7), 970–983. https://doi.org/10.1080/09687599.2012.741518
   Web of Science ®Google Scholar
• Bircher, J., & Kuruvilla, S. (2014). Defining health by addressing individual, social, and environmental determinants: New opportunities for health care and public health. Journal of Public Health Policy, 35(3), 363–386. https://doi.org/10.1057/jphp.2014.19
   PubMed Web of Science ®Google Scholar
• Blustein, D. L. (2008). The role of work in psychological health and well-being: A conceptual, historical, and public policy perspective. American Psychologist, 63(4), 228–240. https://doi.org/10.1037/0003-066x.63.4.228
   PubMed Web of Science ®Google Scholar
• Dean, G., Orford, A., Staines, R., McGee, A., & Smith, K. J. (2017). Psychosocial well-being and health-related quality of life in a UK population with Usher syndrome. BMJ Open, 7(1), e013261. https://doi.org/10.1136/bmjopen-2016-013261
   PubMed Web of Science ®Google Scholar
• Deci, E. L., & Ryan, R. M. (2008). Self-determination theory: A macrotheory of human motivation, development, and health. Canadian Psychology/Psychologie Canadienne, 49(3), 182–185. https://doi.org/10.1037/a0012801
   Web of Science ®Google Scholar
• Dorling, D. (2009). Unemployment and health. BMJ, 338(mar10 2), b829. https://doi.org/10.1136/bmj.b829
   Web of Science ®Google Scholar
• Ehn, M., Anderzen-Carlsson, A., Möller, C., & Wahlqvist, M. (2019). Life strategies of people with deafblindness due to Usher syndrome type 2a - a qualitative study. International Journal of Qualitative Studies on Health and Well-being, 14(1), 1656790. https://doi.org/10.1080/17482631.2019.1656790
   PubMed Web of Science ®Google Scholar
• Ehn, M., Möller, K., Danermark, B., & Möller, C. (2016). The relationship between work and health in persons with Usher syndrome type 2. Journal of Visual Impairment & Blindness, 110(4), 233–244. https://doi.org/10.1177/0145482X1611000403
   Web of Science ®Google Scholar
• Ellis, L., & Hodges, L. (2013). Life and change with Usher: The experiences of diagnosis for people with Usher syndrome. University of Birmingham, School of Education. https://www.birmingham.ac.uk/Documents/college-social-sciences/education/projects/final-report-on-life-and-change-with-usher.pdf
   Google Scholar
• French, S. (2017). Visual impairment and work: Experiences of visually impaired people. Routledge.
   Google Scholar
• Hartong, D. T., Berson, E. L., & Dryja, T. P. (2006). Retinitis pigmentosa. The Lancet, 368(9549), 1795–1809. https://doi.org/10.1016/S0140-6736(06)69740-7
   PubMed Web of Science ®Google Scholar
• Högner, N. (2015). Psychological stress in people with dual sensory impairment through Usher syndrome type II. Journal of Visual Impairment & Blindness, 36(3), 185–197. https://doi.org/10.1177/0145482X1510900303
   Google Scholar
• Hua, H., Anderzen-Carlsson, A., Widen, S., & Lyxell, B. (2015). Conceptions of working life among employees with mild-moderate aided hearing impairment: A phenomenographic study. International Journal of Audiology, 54(11), 873–880. https://doi.org/10.3109/14992027.2015.1060640
   PubMed Web of Science ®Google Scholar
• Kimberling, W., & Möller, C. (1995). Clinical and molecular genetics of Usher syndrome. Journal of the American Academy of Audiology, 6(1), 63–72. https://www.audiology.org/sites/default/files/journal/JAAA_06_01_08.pdf
   PubMedGoogle Scholar
• Kimberling, W., & Möller, C. (2013). Genetic hearing losses associated with eye disorders. In H. V. Toriello & S. D. Smith (Eds.), Hereditary hearing loss and its syndromes (pp. 267–321). Oxford University Press.
   Google Scholar
• Leijendeckers, J. M., Pennings, R. J., Snik, A. F., Bosman, A. J., & Cremers, C. W. (2009). Audiometric characteristics of USH2a patients. Audiology and Neuro-Otology, 14(4), 223–231. https://doi.org/10.1159/000189265
   PubMed Web of Science ®Google Scholar
• Lunau, T., Bambra, C., Eikemo, T. A., van der Wel, K. A., & Dragano, N. (2014). A balancing act? Work-life balance, health and well-being in European welfare states. European Journal of Public Health, 24(3), 422–427. https://doi.org/10.1093/eurpub/cku010
   PubMed Web of Science ®Google Scholar
• Martins, A. C. (2015). Using the International Classification of Functioning, Disability and Health (ICF) to address facilitators and barriers to participation at work. Work, 50(4), 585–593. https://doi.org/10.3233/wor-141965
   PubMedGoogle Scholar
• Millan, J. M., Aller, E., Jaijo, T., Blanco-Kelly, F., Gimenez-Pardo, A., & Ayuso, C. (2011). An update on the genetics of Usher syndrome. Journal of Ophthalmology, 2011, 417217. https://doi.org/10.1155/2011/417217
   PubMed Web of Science ®Google Scholar
• Möller, C. (2003). Deafblindness: Living with sensory deprivation. Lancet, 362(Suppl), S46–S47. https://doi.org/10.1016/S0140-6736(03)15074-X
   Google Scholar
• Möller, K. (2008). Impact on participation and service for persons with deafblindness [Doctoral dissertation]. Örebro universitet. http://oru.diva-portal.org/smash/get/diva2:135788/FULLTEXT02.pdf
   Google Scholar
• Nordic Centre for Welfare and Social Issues. (2019). The Nordic definition of deafblindness. Nordens välfärdscenter. http://www.nordicwelfare.org/wp-content/uploads/2018/03/nordic-definition-of-deafblindness.pdf
   Google Scholar
• OECD. (2009a). Sickness, disability and work: Breaking the barriers. Sweden: Will the recent reforms make it?. Organisation for Economic Co-operation and Development Directorate for Employment, Labour and Social Affairs. http://www.oecd.org/social/soc/42265699.pdf
   Google Scholar
• OECD. (2009b, May 14-15). Sickness, disability and work: Keeping track on the economic downturn: Background paper: High-level forum. Organisation for Economic Co-operation and Development Directorate for Employment, Labour and Social Affairs. http://www.oecd.org/employment/emp/42699911.pdf
   Google Scholar
• Patton, Q. M. (2002). Qualitative research & evaluation methods (3rd ed.). SAGE.
   Google Scholar
• Paul, K. I., & Moser, K. (2009). Unemployment impairs mental health: Meta-analyses. Journal of Vocational Behavior, 74(3), 264–282. https://doi.org/10.1016/j.jvb.2009.01.001
   Web of Science ®Google Scholar
• Punch, R. (2016). Employment and adults who are deaf or hard of hearing: Current status and experiences of barriers, accommodations, and stress in the workplace. American Annals of the Deaf, 161(3), 384–397. https://doi.org/10.1353/aad.2016.0028
   PubMed Web of Science ®Google Scholar
• Sadeghi, A. M., Eriksson, K., Kimberling, W. J., Sjöström, A., & Möller, C. (2006). Longterm visual prognosis in Usher syndrome types 1 and 2. Acta Ophthalmologica Scandinavica, 84(4), 537–544. https://doi.org/10.1111/j.1600-0420.2006.00675.x
   PubMedGoogle Scholar
• Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. Sage.
   Google Scholar
• Statistics Sweden. (2019). The labour market situation for people with disabilities 2018. Statistiska Centralbyrån (Statistics Sweden). https://www.scb.se/contentassets/14e6562ea76147f3a18e06419fd0466f/am0503_2018a01_br_am78br1902.pdf
   Google Scholar
• Svinndal, E. V., Solheim, J., Rise, M. B., & Jensen, C. (2018). Hearing loss and work participation: A cross-sectional study in Norway. International Journal of Audiology, 57(9), 646–656. https://doi.org/10.1080/14992027.2018.1464216
   PubMed Web of Science ®Google Scholar
• Wahlqvist, M., Möller, C., Möller, K., & Danermark, B. (2013). Physical and psychological health in persons with deafblindness that is due to Usher syndrome type II. Journal of Visual Impairment & Blindness, 107(3), 207–220. https://doi.org/10.1177/0145482X1310700305
   Web of Science ®Google Scholar