Swedish Citizens with Cerebral Palsy or Spina Bifida – Perceived Experiences of Social Life and Employment
Main Article Content
Keywords
Disability, Participation, Employment
Abstract
This article offers insight into the ways in which people with cerebral palsy and spina bifida reflect upon their experiences of participation in relation to social life and employment. The qualitative method was used to explore experiences of participation among adults with CP or SB, using semi structured interviews. Participants expressed a desire to make a contribution to the labor market, to have sustainable relationships and to be accepted by others.
References
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AlHeresh, R. A., & Keysor, J. J. (2015). The Work Activity and Participation Outcomes Framework: new look at work disability outcomes through the lens of the ICF. Int J Rehabil Res, 38(2), 107-112.
Andersson, C., & Mattsson, E. (2001). Adults with cerebral palsy: A survey describing problems, needs, and resources, with special emphasis on locomotion. Developmental Medicine and Child Neurology, 43(2), 76-82.
Ballin, L., & Balandin, S. (2007). An exploration of loneliness: communication and the social networks of older people with cerebral palsy. J Intellect Dev Disabil, 32(4), 315-326.
Barnes, C., & Mercer, G. (2005). Disability, work, and welfare: Challenging the social exclusion of disabled people. Work, Employment and Society, 19(3), 527-545.
Bjornson, K., Kobayashi, A., Zhou, C., & Walker, W. (2011). Relationship of therapy to postsecondary education and employment in young adults with physical disabilities. Pediatric Physical Therapy, 23(2), 179-186.
Byrne, B., McLaughlin, E., Byrne, B., & McLaughlin, E. (2007). The social model of disability: Europe and the majority world. Journal of Social Policy, 36, 174-176.
Chacala, A., McCormack, C., Collins, B., & Beagan, B. L. (2014). My view that disability is okay sometimes clashes: Experiences of two disabled occupational therapists. Scandinavian Journal of Occupational Therapy, 21(2), 107-115.
Cope, D. G. (2014). Methods and meanings: credibility and trustworthiness of qualitative research. Oncol Nurs Forum, 41(1), 89-91.
Cope, H., McMahon, K., Heise, E., Eubanks, S., Garrett, M., Gregory, S., &
Ashley-Koch, A. (2013). Outcome and life satisfaction of adults with myelomeningocele. Disabil Health J, 6(3), 236-243.
Edwards, S. D. (2008). The impairment/disability distinction: A response to Shakespeare. Journal of Medical Ethics, 34(1), 26-27.
Frisch, D., & Msall, M. E. (2013). Health, functioning, and participation of adolescents and adults with cerebral palsy: A review of outcomes research. Dev Disabil Res Rev, 18(1), 84-94.
Goodley, D. (2001). 'Learning difficulties', the social model of disability and impairment: Challenging epistemologies. Disability and Society, 16(2), 207-231.
Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today, 24(2), 105-112.
Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277-1288.
Jonsson, G., Ekholm, J., & Schult, M. L. (2008). The International Classification of Functioning, Disability and Health environmental factors as facilitators or barriers used in describing personal and social networks: a pilot study of adults with cerebral palsy. Int J Rehabil Res, 31(2), 119-129.
Kaye, H. S., Jans, L. H., & Jones, E. C. (2011). Why don't employers hire and retain workers with disabilities? J Occup Rehabil, 21(4), 526-536.
Kjellberg, A., & Hemmingsson, H. (2013). Citizenship and Voting: Experiences of Persons With Intellectual Disabilities in Sweden. Journal of Policy and Practice in Intellectual Disabilities, 10(4), 326-333.
Kondracki, N. L., Wellman, N. S., & Amundson, D. R. (2002). Content analysis: review of methods and their applications in nutrition education. J Nutr Educ Behav, 34(4), 224-230.
Livingston, M. H., Stewart, D., Rosenbaum, P. L., & Russell, D. J. (2011). Exploring issues of participation among adolescents with cerebral palsy: what's important to them? Phys Occup Ther Pediatr, 31(3), 275-287.
Lundalv, J., Larsson, P. O., Tornbom, M., & Sunnerhagen, K. S. (2012). The ICF: International Classification of Functioning, Disability and Health (ICF)--a Swiss army knife? Accessibility and disability in a Scandinavian disability magazine (SDM)--a quantitative content analysis. Health Policy, 108(1), 67-75.
Michelsen, S. I., Uldall, P., Kejs, A. M. T., & Madsen, M. (2005). Education and employment prospects in cerebral palsy. Developmental Medicine and Child Neurology, 47(8), 511-517.
National Board of Health and Welfare, Socialstyrelsen, National Board. (2010). Alltjämt ojämlikt - Levnadsförhållanden för vissa personer med funktionsnedsättning. Retrieved from http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/18075/2010-6-21.pdf
Nieuwenhuijsen, C., Donkervoort, M., Nieuwstraten, W., Stam, H. J., & Roebroeck, M. E. (2009). Experienced problems of young adults with cerebral palsy: targets for rehabilitation care. Arch Phys Med Rehabil, 90(11), 1891-1897.
Patton, M. Q. (2002). Qualitative Research and Evaluation Methods. London: SAGE Publications, inc.
Riddle, C. A. (2013). Defining disability: Metaphysical not political. Medicine, Health Care and Philosophy, 16(3), 377-384.
Roach, J. W., Short, B. F., & Saltzman, H. M. (2011). Adult consequences of spina bifida: a cohort study. Clin Orthop Relat Res, 469(5), 1246-1252.
Salter, K., Jutai, J. W., Teasell, R., Foley, N. C., Bitensky, J., & Bayley, M. (2005). Issues for selection of outcome measures in stroke rehabilitation: ICF Participation. Disabil Rehabil, 27(9), 507-528.
Sawin, K. J., & Bellin, M. H. (2010). Quality of life in individuals with spina bifida: a research update. Dev Disabil Res Rev, 16(1), 47-59.
Statistics Sweden, Popluation and Welfare Department, Central Bureau of Statistics. (2016). Information on education and the labour market 2016:1 The labour market situation for people with disabilities 2015. Retrieved from http://www.scb.se/Statistik/_Publikationer/AM0503_2015A01_BR_AM78BR1601.pdf
Schaap Williams, K. (2013). Performing Disability and Theorizing Deformity. English Studies, 94(7), 757-772.
Shakespeare, T. (2013). Disability rights and wrongs revisted. Routledge.
Sorensen, A. (2007). I think I can: Identity and social experiences of adolescents with physical disabilities. Retrieved from http://search.proquest.com/docview/304864156?accountid=11162.
Stewart, D. A., Lawless, J. J., Shimmell, L. J., Palisano, R. J., Freeman, M., Rosenbaum, P. L., & Russell, D. J. (2012). Social participation of adolescents with cerebral palsy: trade-offs and choices. Phys Occup Ther Pediatr, 32(2), 167-179.
Tornbom, K., Tornbom, M., & Sunnerhagen, K. S. (2013). Experiences of participation in a Swedish society among adults with cerebral palsy or spina bifida: involvement and challenges. J Soc Work Disabil Rehabil, 12(4), 256-271.
Tornbom, M., Jonsson, U., & Sunnerhagen, K. S. (2014). Work participation among middle-aged persons with cerebral palsy or spina bifida--a longitudinal study. Disabil Health J, 7(2), 251-255.
Törnbom, M., Jonsson, U., & Sunnerhagen, K. S. (2014). Work participation among middle-aged persons with cerebral palsy or spina bifida – a longitudinal study. Disability and Health Journal, 7(2), 251-255.
Törnbom, M., Lundälv, J., Jesperson, A., Sunnerhagen, K. S., & Grimby, G. (2011). Occupations and means of living in adults with cerebral palsy or meningomyelocele during two decades in Sweden. Scandinavian Journal of Disability Research, 13(1), 21-35.
Van De Ven, L., Post, M., De Witte, L., & Van Den Heuvel, W. (2005). It takes two to tango: The integration of people with disabilities into society. Disability and Society, 20(3), 311-329.
van der Slot, W. M., Nieuwenhuijsen, C., van den Berg-Emons, R. J., Wensink-Boonstra, A. E., Stam, H. J., & Roebroeck, M. E. (2010). Participation and health-related quality of life in adults with spastic bilateral cerebral palsy and the role of self-efficacy. J Rehabil Med, 42(6), 528-535.
Verhoef, J. A., Bramsen, I., Miedema, H. S., Stam, H. J., & Roebroeck, M. E. (2014). Development of work participation in young adults with cerebral palsy: a longitudinal study. J Rehabil Med, 46(7), 648-655.
Verhoef, J. A. C., Bramsen, I., Miedema, H. S., Stam, H. J., & Roebroeck,
M. E. (2014). Development of work participation in young adults with cerebral palsy: A longitudinal study. Journal of Rehabilitation Medicin, 46(7), 648-655.
WHO. (2001). World Health Organization. Geneva, Switzerland.
Yeung, P. H. Y., Passmore, A. E., & Packer, T. L. (2008). Active citizens or passive recipients: How Australian young adults with cerebral palsy define citizenship. Journal of Intellectual and Developmental Disability, 33(1), 65-75.
Albrecht, G. L., & Devlieger, P. J. (1999). The disability paradox: high quality of life against all odds. Soc Sci Med, 48(8), 977-988.
AlHeresh, R. A., & Keysor, J. J. (2015). The Work Activity and Participation Outcomes Framework: new look at work disability outcomes through the lens of the ICF. Int J Rehabil Res, 38(2), 107-112.
Andersson, C., & Mattsson, E. (2001). Adults with cerebral palsy: A survey describing problems, needs, and resources, with special emphasis on locomotion. Developmental Medicine and Child Neurology, 43(2), 76-82.
Ballin, L., & Balandin, S. (2007). An exploration of loneliness: communication and the social networks of older people with cerebral palsy. J Intellect Dev Disabil, 32(4), 315-326.
Barnes, C., & Mercer, G. (2005). Disability, work, and welfare: Challenging the social exclusion of disabled people. Work, Employment and Society, 19(3), 527-545.
Bjornson, K., Kobayashi, A., Zhou, C., & Walker, W. (2011). Relationship of therapy to postsecondary education and employment in young adults with physical disabilities. Pediatric Physical Therapy, 23(2), 179-186.
Byrne, B., McLaughlin, E., Byrne, B., & McLaughlin, E. (2007). The social model of disability: Europe and the majority world. Journal of Social Policy, 36, 174-176.
Chacala, A., McCormack, C., Collins, B., & Beagan, B. L. (2014). My view that disability is okay sometimes clashes: Experiences of two disabled occupational therapists. Scandinavian Journal of Occupational Therapy, 21(2), 107-115.
Cope, D. G. (2014). Methods and meanings: credibility and trustworthiness of qualitative research. Oncol Nurs Forum, 41(1), 89-91.
Cope, H., McMahon, K., Heise, E., Eubanks, S., Garrett, M., Gregory, S., &
Ashley-Koch, A. (2013). Outcome and life satisfaction of adults with myelomeningocele. Disabil Health J, 6(3), 236-243.
Edwards, S. D. (2008). The impairment/disability distinction: A response to Shakespeare. Journal of Medical Ethics, 34(1), 26-27.
Frisch, D., & Msall, M. E. (2013). Health, functioning, and participation of adolescents and adults with cerebral palsy: A review of outcomes research. Dev Disabil Res Rev, 18(1), 84-94.
Goodley, D. (2001). 'Learning difficulties', the social model of disability and impairment: Challenging epistemologies. Disability and Society, 16(2), 207-231.
Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today, 24(2), 105-112.
Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277-1288.
Jonsson, G., Ekholm, J., & Schult, M. L. (2008). The International Classification of Functioning, Disability and Health environmental factors as facilitators or barriers used in describing personal and social networks: a pilot study of adults with cerebral palsy. Int J Rehabil Res, 31(2), 119-129.
Kaye, H. S., Jans, L. H., & Jones, E. C. (2011). Why don't employers hire and retain workers with disabilities? J Occup Rehabil, 21(4), 526-536.
Kjellberg, A., & Hemmingsson, H. (2013). Citizenship and Voting: Experiences of Persons With Intellectual Disabilities in Sweden. Journal of Policy and Practice in Intellectual Disabilities, 10(4), 326-333.
Kondracki, N. L., Wellman, N. S., & Amundson, D. R. (2002). Content analysis: review of methods and their applications in nutrition education. J Nutr Educ Behav, 34(4), 224-230.
Livingston, M. H., Stewart, D., Rosenbaum, P. L., & Russell, D. J. (2011). Exploring issues of participation among adolescents with cerebral palsy: what's important to them? Phys Occup Ther Pediatr, 31(3), 275-287.
Lundalv, J., Larsson, P. O., Tornbom, M., & Sunnerhagen, K. S. (2012). The ICF: International Classification of Functioning, Disability and Health (ICF)--a Swiss army knife? Accessibility and disability in a Scandinavian disability magazine (SDM)--a quantitative content analysis. Health Policy, 108(1), 67-75.
Michelsen, S. I., Uldall, P., Kejs, A. M. T., & Madsen, M. (2005). Education and employment prospects in cerebral palsy. Developmental Medicine and Child Neurology, 47(8), 511-517.
National Board of Health and Welfare, Socialstyrelsen, National Board. (2010). Alltjämt ojämlikt - Levnadsförhållanden för vissa personer med funktionsnedsättning. Retrieved from http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/18075/2010-6-21.pdf
Nieuwenhuijsen, C., Donkervoort, M., Nieuwstraten, W., Stam, H. J., & Roebroeck, M. E. (2009). Experienced problems of young adults with cerebral palsy: targets for rehabilitation care. Arch Phys Med Rehabil, 90(11), 1891-1897.
Patton, M. Q. (2002). Qualitative Research and Evaluation Methods. London: SAGE Publications, inc.
Riddle, C. A. (2013). Defining disability: Metaphysical not political. Medicine, Health Care and Philosophy, 16(3), 377-384.
Roach, J. W., Short, B. F., & Saltzman, H. M. (2011). Adult consequences of spina bifida: a cohort study. Clin Orthop Relat Res, 469(5), 1246-1252.
Salter, K., Jutai, J. W., Teasell, R., Foley, N. C., Bitensky, J., & Bayley, M. (2005). Issues for selection of outcome measures in stroke rehabilitation: ICF Participation. Disabil Rehabil, 27(9), 507-528.
Sawin, K. J., & Bellin, M. H. (2010). Quality of life in individuals with spina bifida: a research update. Dev Disabil Res Rev, 16(1), 47-59.
Statistics Sweden, Popluation and Welfare Department, Central Bureau of Statistics. (2016). Information on education and the labour market 2016:1 The labour market situation for people with disabilities 2015. Retrieved from http://www.scb.se/Statistik/_Publikationer/AM0503_2015A01_BR_AM78BR1601.pdf
Schaap Williams, K. (2013). Performing Disability and Theorizing Deformity. English Studies, 94(7), 757-772.
Shakespeare, T. (2013). Disability rights and wrongs revisted. Routledge.
Sorensen, A. (2007). I think I can: Identity and social experiences of adolescents with physical disabilities. Retrieved from http://search.proquest.com/docview/304864156?accountid=11162.
Stewart, D. A., Lawless, J. J., Shimmell, L. J., Palisano, R. J., Freeman, M., Rosenbaum, P. L., & Russell, D. J. (2012). Social participation of adolescents with cerebral palsy: trade-offs and choices. Phys Occup Ther Pediatr, 32(2), 167-179.
Tornbom, K., Tornbom, M., & Sunnerhagen, K. S. (2013). Experiences of participation in a Swedish society among adults with cerebral palsy or spina bifida: involvement and challenges. J Soc Work Disabil Rehabil, 12(4), 256-271.
Tornbom, M., Jonsson, U., & Sunnerhagen, K. S. (2014). Work participation among middle-aged persons with cerebral palsy or spina bifida--a longitudinal study. Disabil Health J, 7(2), 251-255.
Törnbom, M., Jonsson, U., & Sunnerhagen, K. S. (2014). Work participation among middle-aged persons with cerebral palsy or spina bifida – a longitudinal study. Disability and Health Journal, 7(2), 251-255.
Törnbom, M., Lundälv, J., Jesperson, A., Sunnerhagen, K. S., & Grimby, G. (2011). Occupations and means of living in adults with cerebral palsy or meningomyelocele during two decades in Sweden. Scandinavian Journal of Disability Research, 13(1), 21-35.
Van De Ven, L., Post, M., De Witte, L., & Van Den Heuvel, W. (2005). It takes two to tango: The integration of people with disabilities into society. Disability and Society, 20(3), 311-329.
van der Slot, W. M., Nieuwenhuijsen, C., van den Berg-Emons, R. J., Wensink-Boonstra, A. E., Stam, H. J., & Roebroeck, M. E. (2010). Participation and health-related quality of life in adults with spastic bilateral cerebral palsy and the role of self-efficacy. J Rehabil Med, 42(6), 528-535.
Verhoef, J. A., Bramsen, I., Miedema, H. S., Stam, H. J., & Roebroeck, M. E. (2014). Development of work participation in young adults with cerebral palsy: a longitudinal study. J Rehabil Med, 46(7), 648-655.
Verhoef, J. A. C., Bramsen, I., Miedema, H. S., Stam, H. J., & Roebroeck,
M. E. (2014). Development of work participation in young adults with cerebral palsy: A longitudinal study. Journal of Rehabilitation Medicin, 46(7), 648-655.
WHO. (2001). World Health Organization. Geneva, Switzerland.
Yeung, P. H. Y., Passmore, A. E., & Packer, T. L. (2008). Active citizens or passive recipients: How Australian young adults with cerebral palsy define citizenship. Journal of Intellectual and Developmental Disability, 33(1), 65-75.