The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home

References

• Strauss DJ, Devivo MJ, Paculdo DR, Shavelle RM. Trends in life expectancy after spinal cord injury. Arch Phys Med Rehabil 2006;87:1079–1085.
   PubMed Web of Science ®Google Scholar
• O’Connor PJ. Survival after spinal cord injury in Australia. Arch Phys Med Rehabil 2005;86:37–47.
   PubMed Web of Science ®Google Scholar
• DeVivo MJ, Krause JS, Lammertse DP. Recent trends in mortality and causes of death among persons with spinal cord injury. Arch Phys Med Rehabil 1999;80:1411–1419.
   PubMed Web of Science ®Google Scholar
• Cardol M, de Haan RJ, de Jong BA, van den Bos GA, de Groot IJ. Psychometric properties of the Impact on Participation and Autonomy Questionnaire. Arch Phys Med Rehabil 2001;82:210–216.
   PubMed Web of Science ®Google Scholar
• Chan RC. Active participation and autonomy: An ultimate target for rehabilitation. Disabil Rehabil 2002;24:983–984.
   Web of Science ®Google Scholar
• Rochette A, Korner-Bitensky N, Levasseur M. ‘Optimal’ participation: A reflective look. Disabil Rehabil 2006;28:1231–1235.
   PubMed Web of Science ®Google Scholar
• Hemmingsson H, Jonsson H. An occupational perspective on the concept of participation in the International Classification of Functioning, Disability and Health–some critical remarks. Am J Occup Ther 2005;59:569–576.
   PubMed Web of Science ®Google Scholar
• Ueda S, Okawa Y. The subjective dimension of functioning and disability: What is it and what is it for? Disabil Rehabil 2003;25:596–601.
   PubMed Web of Science ®Google Scholar
• Williams SJ. Sociological imperialism and the profession of medicine revisited: Where are we now? Sociol Health Illn 2001;23:135–158.
   Web of Science ®Google Scholar
• Hammel J, Magasi S, Heinemann A, Whiteneck G, Bogner J, Rodriguez E. What does participation mean? An insider perspective from people with disabilities. Disabil Rehabil 2008;30:1445–1460.
   PubMed Web of Science ®Google Scholar
• Borell L, Asaba E, Rosenberg L, Schult ML, Townsend E. Exploring experiences of “participation” among individuals living with chronic pain. Scand J Occup Ther 2006;13:76–85.
   PubMedGoogle Scholar
• Haak M, Ivanoff SD, Fange A, Sixsmith J, Iwarsson S. Home as the locus and origin for participation: Experiences among very old Swedish people. OTJR: Occupation, Participation and Health 2007;27:95–103.
   Web of Science ®Google Scholar
• Häggström A, Lund ML. The complexity of participation in daily life: A qualitative study of the experiences of persons with acquired brain injury. J Rehabil Med 2008;40:89–95.
   PubMed Web of Science ®Google Scholar
• Noreau L, Fougeyrollas P, Post M, Asano M. Participation after spinal cord injury: The evolution of conceptualization and measurement. J Neurol Phys Ther 2005;29:147–156.
   PubMedGoogle Scholar
• Van de Velde D, Bracke P, Van Hove G, Josephsson S, Vanderstraeten G. Perceived Participation, experiences from persons with spinal cord injury in their transition period from hospital to home. University Ghent; 2009.
   Google Scholar
• English V, Romano-Chrichley G, Sheather J. Medical ethics today: The BMA ‘s handbook of ethics and law. 2th ed. London: Britisch Medical Association, 2009.
   Google Scholar
• Mele AR. Autonomous agents. New York: Oxford University Press, 1995.
   Google Scholar
• Cardol M, De Jong BA, Ward CD. On autonomy and participation in rehabilitation. Disabil Rehabil 2002;24:970–4; discussion 975.
   PubMedGoogle Scholar
• Agich G. Autonomy and long term-care. Oxford: Oxford Universtiy Press, 1993.
   Google Scholar
• Wray S. What constitutes agency and empowerment for women in later life. The Sociological Review 2004;52:22–38.
   Web of Science ®Google Scholar
• Saadah MA. On autonomy and participation in rehabilitation. Disabil Rehabil 2002;24:977–982.
   Web of Science ®Google Scholar
• Clapton J, Kendall E. Autonomy and participation in rehabilitation: Time for a new paradigm? Disabil Rehabil 2002;24:987–991.
   Web of Science ®Google Scholar
• Blackhall LJ, Murphy ST, Frank G, Michel V, Azen S. Ethnicity and attitudes toward patient autonomy. JAMA 1995;274:820–825.
   PubMed Web of Science ®Google Scholar
• Collopy BJ. Autonomy in long term care: Some crucial distinctions. Gerontologist 1988;28 Suppl:10–17.
   PubMed Web of Science ®Google Scholar
• Lynöe N, Juth N, Helgesson G. How to reveal disguised paternalism. Med Health Care Philos 2010;13:59–65.
   PubMed Web of Science ®Google Scholar
• Demenchonok E. The universal concept of human rights as a regulative principle: Freedom versus paternalism. Am J Econ Sociol 2009;273–301.
   Web of Science ®Google Scholar
• Holroyd J. Relational Autonomy and paternalistic Interventions. Res Publica 2009;15:321–336.
   Google Scholar
• Clapton J. Irrelevance personified: An encounter between disability and bioethics. Interaction 2000;13:11–15.
   Google Scholar
• Oliver M. Understanding disability. From theory to practice. 2th ed. Basingstoke Basingstoke: Palgrave Macmillan; 2009.
   Google Scholar
• Wade DT, Halligan PW. Do biomedical models of illness make for good healthcare systems? BMJ 2004;329:1398–1401.
   PubMed Web of Science ®Google Scholar
• Longtin Y, Sax H, Leape LL, Sheridan SE, Donaldson L, Pittet D. Patient participation: Current knowledge and applicability to patient safety. Mayo Clin Proc 2010;85:53–62.
   PubMed Web of Science ®Google Scholar
• Guadagnoli E, Ward P. Patient participation in decision-making. Soc Sci Med 1998;47:329–339.
   PubMed Web of Science ®Google Scholar
• Levinson W, Kao A, Kuby A, Thisted RA. Not all patients want to participate in decision making. A national study of public preferences. J Gen Intern Med 2005;20:531–535.
   PubMed Web of Science ®Google Scholar
• van der Weijden T, Légaré F, Boivin A, Burgers JS, van Veenendaal H, Stiggelbout AM, Faber M, Elwyn G. How to integrate individual patient values and preferences in clinical practice guidelines? A research protocol. Implement Sci 2010;5:10.
   PubMed Web of Science ®Google Scholar
• Ruiz-Moral R. The role of physician-patient communication in promoting patient-participatory decision making. Health Expect 2010;13:33–44.
   PubMed Web of Science ®Google Scholar
• McDonald R, Mead N, Cheraghi-Sohi S, Bower P, Whalley D, Roland M. Governing the ethical consumer: Identity, choice and the primary care medical encounter. Sociol Health Illn 2007;29:430–456.
   PubMed Web of Science ®Google Scholar
• Sandman L, Munthe C. Shared decision making, paternalism and patient choice. Health Care Anal 2010;18:60–84.
   PubMed Web of Science ®Google Scholar
• World Health Organisation. International Classification of Functioning, Disability and Health. Geneva: WHO, 2001.
   Google Scholar
• Barron K. autonomy in everyday life, for whom? Disabil Society 2001;16:431–447.
   Web of Science ®Google Scholar
• Van de Velde D, Bracke P, Van Hove G, Josephsson S, Vanderstraeten G. How do people with spinal cord injury choose activities? University Ghent Ghent;, 2010.
   Google Scholar
• Catz A, Itzkovich M. On autonomy and participation in rehabilitation. Disability & Rehabilitation 2002;24:996–998.
   Web of Science ®Google Scholar
• Strauss AL, Corbin J. Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park: CA: Sage, 1990.
   Google Scholar
• Strauss AL, Corbin J. Basics of qualitative research: Techniques and procedures for developing grounded theory. 2th ed. Thousand Oaks: CA: Sage pubications, 1998.
   Google Scholar
• Stanley M, Cheek J. Grounded theory: Exploiting the potential for occupational therapy. Br J Occup Ther 2003;66:143–150.
   Google Scholar
• Dallmeijer AJ, van der Woude LH. Health related functional status in men with spinal cord injury: Relationship with lesion level and endurance capacity. Spinal Cord 2001;39:577–583.
   PubMed Web of Science ®Google Scholar
• Kalpakjian CZ, Toussaint LL, Albright KJ, Bombardier CH, Krause JK, Tate DG. Patient health Questionnaire-9 in spinal cord injury: An examination of factor structure as related to gender. J Spinal Cord Med 2009;32:147–156.
   PubMed Web of Science ®Google Scholar
• Brand JE, Burgard SA. Effect of job displacement on social participation: Findings over the life course of a cohort of joiners. 2007. Population Studies, University of North Carolina - Chapel Hill.
   Google Scholar
• Kendall MB, Ungerer G, Dorsett P. Bridging the gap: Transitional rehabilitation services for people with spinal cord injury. Disabil Rehabil 2003;25:1008–1015.
   PubMed Web of Science ®Google Scholar
• Lincoln S, Guba E. Naturalistic inquiry. Beverly Hills: Sage, 1985.
   Google Scholar
• Pentland W, Harvey AS, Smith T, Walker J. The impact of spinal cord injury on men’s time use. Spinal Cord 1999;37:786–792.
   PubMed Web of Science ®Google Scholar
• Kreuter M. Spinal cord injury and partner relationships. Spinal Cord 2000;38:2–6.
   PubMed Web of Science ®Google Scholar
• Isaksson G, Josephsson S, Lexell J, Skär L. Men’s experiences of giving and taking social support after their wife’s spinal cord injury. Scand J Occup Ther 2008;15:236–246.
   PubMed Web of Science ®Google Scholar
• Chan RC. How does spinal cord injury affect marital relationship? A story from both sides of the couple. Disabil Rehabil 2000;22:764–775.
   PubMed Web of Science ®Google Scholar
• Dickson A, O’Brien G, Ward R, Allan D, O’Carroll R. The impact of assuming the primary caregiver role following traumatic spinal cord injury: An interpretative phenomenological analysis of the spouse’s experience. Psychol Health 2010;25:1101–1120.
   PubMed Web of Science ®Google Scholar
• Gajraj-Singh P. Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in Fiji. Spinal Cord 2011;49:928–934.
   PubMed Web of Science ®Google Scholar
• Bergmark L, Westgren N, Asaba E. Returning to work after spinal cord injury: Exploring young adults’ early expectations and experience. Disabil Rehabil 2011; (In Press).
   PubMed Web of Science ®Google Scholar
• Lawrence JP. Radical evil and Kant’s turn to religion. JValue Inq 2002;36:319–335.
   Web of Science ®Google Scholar
• Christman J, Anderson J. Autonomy and the challenges to liberalism: New essays. Cambridge: Cambridge Univesity Press, 2005.
   Google Scholar
• Christman J. Relational autonomy, liberal individualism, and the social constitution of selves. Phil Stud 2004;117:143–164.
   Web of Science ®Google Scholar
• Kendall E, Buys N, Larner J. Community-based service delivery in rehabilitation: The promise and the paradox. Disabil Rehabil 2000;22:435–445.
   PubMed Web of Science ®Google Scholar
• Zimmerman MA. Taking aim on empowerment research: On the distinction between psychological and individual conceptions. Am J Comm Psych 1999;18:169–177.
   Web of Science ®Google Scholar
• Brown F, Gothelf CR. Self-determination for the individuals. In: Lehr D, Brown F, eds. editors.People with disabilities who challenge the system. Baltimore: 1995. p 335–353.
   Google Scholar
• Isaksson G, Josephsson S, Lexell J, Skär L. To regain participation in occupations through human encounters–narratives from women with spinal cord injury. Disabil Rehabil 2007;29:1679–1688.
   PubMed Web of Science ®Google Scholar
• Chin NP, Monroe A, Fiscella K. Social determinants of (un)healthy behaviors. Educ Health (Abingdon) 2000;13:317–328.
   PubMedGoogle Scholar
• MacKenzie C, Stoljar N. Autonomy Refigured. In: Catriona Mackenzie, Nathalie Stoljar, eds. editors.Relational Autonomy: Feminist perspectives on autonomy, agency, and the self. Oxford: Oxford University Press; 2000.
   Google Scholar
• Boschen KA, Tonack M, Gargaro J. Long-term adjustment and community reintegration following spinal cord injury. Int J Rehabil Res 2003;26:157–164.
   PubMed Web of Science ®Google Scholar
• Asai T, Takano K, Sugimori E, Tanno Y. [Development of the sense of agency scale and its factor structure]. Shinrigaku Kenkyu 2009;80:414–421.
   PubMedGoogle Scholar
• Gallagher S. Philosophical conceptions of the self: Implications for cognitive science. Trends Cogn Sci 2000;4:14–21.
   PubMed Web of Science ®Google Scholar