Posts Tagged functioning effectively
[Abstract + References] Is independence enough? Rehabilitation should include autonomy and social engagement to achieve quality of life
Posted by Kostas Pantremenos in REHABILITATION on September 28, 2020
Abstract
Purpose:
This discussion paper argues that holding independence as the central goal for rehabilitation has limitations that hinder successful outcomes. It shows why autonomy and social engagement should also serve as goals of rehabilitation, in order to achieve quality of life and effective functioning.
Methods:
The paper reviews problems arising from the over-emphasis on independence in rehabilitation. Although independence is a valuable goal on some tasks, it is sometimes not possible or desirable and is best complimented by autonomy and social engagement. Autonomy recognises that enacting some goals requires the support of other people. Autonomy is thus linked to social engagement (connectivity) in the workplace and personal relationships. The paper applies this framework to motor and cognitive disabilities.
Results:
The inclusion of autonomy and social engagement as goals for rehabilitation addresses the limitations of independence and can serve the unifying aim of enhancing the person’s quality of life. These goals apply equally to motor disabilities and the cognitive and behavioural effects of injuries which affect personal and work relationships.
Conclusions:
Rehabilitation is likely to be more effective if it aims at a combination of independence, autonomy and social engagement, in service of the goal of a good quality of life.
References
1. | Dunn, DS. The social psychology of disability. New York: Oxford University Press, 2015. Google Scholar |
2. | Brain Injury association of America . Treatment. https://www.biausa.org/brain-injury/about-brain-injury/treatment (accessed 21 June 2017). Google Scholar |
3. | Irdesel, J, Aydiner, SB, Akgoz, S. Rehabilitation outcome after traumatic brain injury. Neurocirugía 2007; 18(1): 5–15. Google Scholar | Crossref | Medline |
4. | Johns Hopkins Medicine . Traumatic brain injury. http://www.hopkinsmedicine.org/healthlibrary/conditions/physical_medicine_and_rehabilitation/acquired_brain_injury_85,P01145/. (accessed 21 December 2016). Google Scholar |
5. | Cardol, M, De Jong, BA, Ward, CD. On autonomy and participation in rehabilitation. Disabil Rehab 2002; 24(18): 970–974. Google Scholar | Crossref | Medline |
6. | Gawande, A. Being mortal: illness, medicine, and what matters in the end. London: Welcome Collection, 2015. Google Scholar |
7. | Barnes, C. Independent living, politics and policy in the United Kingdom: a social model account. Rev Disab Stud 2014; 1: 4. Google Scholar |
8. | Gibson, BE. Rehabilitation: a post-critical approach. Boca Raton, FL: CRC Press, 2016. Google Scholar | Crossref |
9. | Gibson, BE. Parallels and problems of normalization in rehabilitation and universal design: enabling connectivities. Disabil Rehabil 2014; 36(16): 1328–1233. Google Scholar | Crossref |
10. | DeJong, G. Independent living: from social movement to analytic paradigm. Arch Phys Med Rehabil 1979; 60: 435–446. Google Scholar | Medline | ISI |
11. | Hoofien, D, Gilboa, A, Vakil, E, et al. Traumatic brain injury (TBI) 10-20years later: a comprehensive outcome study of psychiatric symptomatology, cognitive abilities and psychosocial functioning. Brain Inj 2001; 15(3): 189–209. Google Scholar | Crossref | Medline |
12. | Barskova, T, Wilz, G. Interdependence of stroke survivors’ recovery and their relatives’ attitudes and health: a contribution to investigating the causal effects. Disabil Rehabil 2007; 29(19): 1481–1491. Google Scholar | Crossref | Medline |
13. | Wrosch, C, Scheier, ME, Miller, GE, et al. Adaptive self-regulation of unattainable goals: goal disengagement, goal reengagement, and subjective well-being. Pers Soc Psychol B 2003; 29: 1494–1508. Google Scholar | SAGE Journals | ISI |
14. | Hilberink, SR, Cardol, M. Agency in the twenty-first century: the emperor’s new clothes. Disab Soc 2013; 28(4): 569–573. Google Scholar | Crossref |
15. | Kreutzer, JS, Rapport, LJ, Marwitz, JH, et al. Caregivers’ well-being after traumatic brain injury: a multi-center investigation. Arch Phys Med Rehabil 2009; 90: 939–946. Google Scholar | Crossref | Medline | ISI |
16. | Tanielian, T, Jaycox, LH (eds). Invisible wounds of war: psychological and cognitive injuries, their consequences, and services to assist recovery. Santa Monica, CA: RAND, 2008. Google Scholar |
17. | Agich, GJ. Dependence and autonomy in old age: an ethical framework for long-term care. Cambridge: Cambridge University Press, 2003. Google Scholar | Crossref |
18. | Marin, RS, Wilkosz, PA. Disorders of diminished motivation. J Head Trauma Rehabil 2005; 20(4): 377–388. Google Scholar | Crossref | Medline | ISI |
19. | Sim, J. Respect for autonomy: issues in neurological rehabilitation. Clin Rehabil 1998; 12(1): 3–10. Google Scholar | SAGE Journals | ISI |
20. | Harvey, J. Theorising everyday life after acquired brain injury. Disabil Soc 2018; 33(1): 78–93. Google Scholar | Crossref |
21. | Remnant, J, Adams, J. The nutritional content and cost of supermarket ready-meals. cross-sectional analysis. Appetite 2015; 92: 36–42. Google Scholar | Crossref | Medline |
22. | Esser, I, Palme, J. Do public pensions matter for health and wellbeing among retired persons? Basic and income security pensions across 13 Western European countries. Int J Soc Welf 2010; 19(S1): 5103–5120. Google Scholar | Crossref |
23. | Wadeson, N. The division of labour under uncertainty. J Inst Theor Econ 2013; 169: 253–274. Google Scholar | Crossref |
24. | Clapton, J, Kendall, E. Autonomy and participation in rehabilitation. Time for a new paradigm? Disabil Rehabil 2002; 24(18): 987–991. Google Scholar | Crossref |
25. | Van Lange, PAM, Balliet, D. Interdependence theory. In: Mikulincer, M, Shaver, PR (eds) The APA handbook of personality and social psychology: Vol. 3. Interpersonal relations. Washington, DC: The American Psychological Association, 2015. Google Scholar | Crossref |
26. | Condeluci, A. Interdependence: the route to community. 2nd ed. Boca Raton, FL: CRC Press,1998. Google Scholar |
27. | Meyer, LH, Park, HS, Grenot-Scheyer, M, et al. (eds). Making friends: the influences of culture and development. Baltimore, MD: Paul H Brookes, 1998. Google Scholar |
28. | Haas, S, Gawande, A, Reynolds, ME. The risk to patient safety from health system expansions. JAMA 2018; 319(17): 1765–1766. Google Scholar | Crossref | Medline |
29. | Williams, WH, Mewse, AJ, Tonks, J, et al. Traumatic brain injury in a prison population: prevalence and risk for re-offending. Brain Inj 2010; 24(10): 1184–1188. Google Scholar | Crossref | Medline |
30. | Conly, S. Against autonomy: justifying coercive paternalism. Cambridge, MA: Cambridge University Press, 2014. Google Scholar |
31. | White, GW, Simpson, JL, Gonda, C, et al. Moving form independence to interdependence: a conceptual model for better understanding community participation of centers for independent living consumers. J Disabil Policy Stu 2010; 20(4): 233–240. Google Scholar | SAGE Journals | ISI |
32. | Gooden-Ledbetter, MJ, Cole, MT, Maher, JK, et al. Self-efficacy and interdependence as predictors of life satisfaction for people with disabilities: implications for independent living programs. J Vocat Rehabil 2007; 27(3): 153–161. Google Scholar |
33. | Sadaah, MA. On autonomy and participation in rehabilitation. Disabil Rehabil 2002; 24(18): 977–982. Google Scholar | Crossref |
34. | Leopold, A, Krueger, F, dal Monte, O, et al. Damage to the left ventromedial prefrontal cortex impacts affective theory of mind. Soc Cogn Affect Neur 2012; 7(8): 871–880. Google Scholar | Crossref | Medline |
35. | Corrigan, PW. How stigma interferes with mental health care. Am Psychol 2004; 59(7): 614–625. Google Scholar | Crossref | Medline | ISI |
36. | Krahn, T. Traumatic brain injury and the use of documentary narrative media to redress social stigma. In: Clausen, J, Levy, N (eds) Handbook of neuroethics. Dordrecht: Springer, 2015, pp.1501–1524. Google Scholar |
37. | Swift, T, Wilson, SL. Misconceptions about brain injury among the general public and non-expert health professionals: an exploratory study. Brain Inj 2001; 15: 149–165. Google Scholar | Crossref | Medline | ISI |
38. | Block, CK, West, SE, Goldin, Y. Misconceptions and misattributions about traumatic brain injury: an integrated conceptual framework. Phys Med Rehabil 2016; 8(1): 58–68. Google Scholar |
39. | McClure, J. The role of causal attributions in public misconceptions about brain injury. Rehabil Psychol 2011; 56: 85–93. Google Scholar | Crossref | Medline | ISI |
40. | McClure, J, Devlin, ME, McDowall, J, et al. Visible markers of brain injury influence attributions for adolescents’ behaviour. Brain Inj 2006; 20(10): 1029–1035. Google Scholar | Crossref | Medline |
41. | McClure, J, Buchanan, S, McDowall, J, et al. Attributions for behaviours of persons with brain injury: the role of perceived severity and time since injury. Brain Inj 2008; 22: 639–648. Google Scholar | Crossref | Medline |
42. | Rusch, FR, Chadsey-Rusch, J, Johnson, JR. Supported employment: emerging opportunities for employment integration. In: LH, Meyer, CA, Peck, L, Brown (eds), Critical issues in the lives of people with severe disabilities. Baltimore, MD: Paul H. Brookes, 1991, pp.145–169. Google Scholar |
43. | Wyse, JJ, Pogoda, TK, Mastarone, GL, et al. Employment and vocational rehabilitation experiences among veterans with polytrauma/traumatic brain injury history. Psychol Serv 2020; 17(1): 65–74. Google Scholar | Crossref | Medline |
44. | Seitz, RJ, Nickel, J, Azari, NP. Functional modularity of the medial prefrontal cortex: involvement in human empathy. Neuropsychology 2006; 20(6): 743–751. Google Scholar | Crossref | Medline |
45. | Temkin, NR, Corrigan, JD, Dikmen, SS, et al. Social functioning after brain injury. J Head Trauma Rehabil 2010; 26(6): 460–467. Google Scholar | Crossref |
46. | Chesnel, C, Jourdan, C, Bayen, E, et al. Self-awareness four years after severe traumatic brain injury: discordance between the patient’s and relative’s complaints. Results from the PariS-TBI study. Clin Rehabil 2018; 32(5): 692–704. Google Scholar | SAGE Journals |
47. | Siegert, RJ, Ward, T, Levack, WMM, et al. A good lives model of clinical and community rehabilitation. Disabil Rehabil 2007; 29: 1604–1615. Google Scholar | Crossref | Medline | ISI |
48. | Triandis, HC. Individualism-collectivism and personality. J Pers 2001; 69(6): 907–924. Google Scholar | Crossref | Medline | ISI |
49. | Bodhit, A, Patel, P, Daneshvar, Y, et al. How much does a traumatic brain injury cost? Neurology 2014; 82: 10. Google Scholar |
50. | Wade, D. Rehabilitation – a new approach. Part two: the underlying theories. Clin Rehabil 2015; 29(12): 1145–1154. Google Scholar | SAGE Journals | ISI |
51. | Steadman-Pare, D, Colantonio, A, Ratcliff, G, et al. Factors associated with perceived quality of life many years after traumatic brain injury. J Head Trauma Rehabil 2001; 16(4): 330–342. Google Scholar | Crossref | Medline | ISI |
52. | Diener, E, Oishi, S, Tay, L. Advances in subjective well-being research. Nat Hum Behav 2018; 2: 253–260. Google Scholar | Crossref | Medline |
53. | Putnam, RD. Bowling alone: the collapse and revival of American community. New York: Simon & Schuster, 2000. Google Scholar | Crossref |
54. | McClure, J. A day in the life of brain injury: living in two worlds. Manuscript in preparation, Victoria University of Wellington, 2020. Google Scholar |
Source: https://journals.sagepub.com/doi/abs/10.1177/0269215520954344