Hostname: page-component-848d4c4894-xm8r8 Total loading time: 0 Render date: 2024-06-27T16:48:35.110Z Has data issue: false hasContentIssue false
  • English
  • Français

Everyday Choice Making: Outcomes of Young People with Acquired Brain Injury After Moving from Residential Aged Care to Community-Based Supported Accommodation

Published online by Cambridge University Press:  26 January 2016

Dianne Winkler ,
Libby Callaway ,
Sue Sloan  and
Nadine Holgate
Dianne Winkler*
Affiliation:
Summer Foundation Pty Ltd, Blackburn, Australia
Libby Callaway
Affiliation:
Summer Foundation Pty Ltd, Blackburn, Australia Department of Occupational Therapy, Monash University, Frankston, Australia
Sue Sloan
Affiliation:
Osborn Sloan & Associates Pty Ltd, Kew, Australia
Nadine Holgate
Affiliation:
Summer Foundation Pty Ltd, Blackburn, Australia
*
Address for correspondence: Di Winkler, Phone: +61 3 9894 7006, PO Box 208, Blackburn, 3130. E-mail: di.winkler@summerfoundation.org.au
Get access

Abstract

Objectives: (1) Examine the opportunities young people with acquired brain injury (ABI) have to make everyday choices after moving out of residential aged care (RAC) into community-based shared supported accommodation (SSA); (2) Compare everyday choice making of this group with a group of people with ABI living in RAC.

Research design: Mixed methods comparing two independent groups.

Method and procedures: Responses on eleven relevant items of the Resident Choice Scale (RCS) were compared between two groups; 45 people with ABI living in RAC and 20 people with ABI who had moved from RAC to live in SSA. In addition, the choice making experiences of the SSA group were investigated through semi-structured interviews with the individual and/or their family member. Interviews were recorded, transcribed and thematically analysed.

Results: Greater opportunities for everyday choice making were demonstrated on 10 out of the 11 RCS items for people living in SSA, compared to RAC. These included improved choice regarding meals, bedtime and leisure activities. Qualitative data also illustrated new choice opportunities afforded to the SSA group. Five key themes relating to choice were identified: rules and routines, communication, things to do, food and home-like environment.

Conclusions: Community-based, age-appropriate and small-scale supported accommodation provides people with ABI more opportunities for everyday choice making than RAC.

Keywords

Acquired brain injuryautonomyself-determinationaged careyoung adults
Type
Articles
Information
Brain Impairment , Volume 16 , Issue 3 , December 2015 , pp. 221 - 235
Copyright
Copyright © Australasian Society for the Study of Brain Impairment 2016 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

AIHW National Aged Care Data Clearinghouse. (2014). AIHW national aged care data clearinghouse data request: Younger people in RAC 2012–2013. Canberra, Australia: Author.Google Scholar
Australian Institute of Health and Welfare. (2010). Younger people with disability in residential aged care program: Final report on the 2008–09 minimum data set disability series. Canberra, ACT: AIHW.Google Scholar
Australian Institute of Health and Welfare. (2012). Residential aged care in Australia 2010–11: A statistical overview aged care statistics series no. 36. Canberra, ACT: Author.Google Scholar
Australian Law Reform Commission. (2014). Equality, capacity and disability in commonwealth laws (DP 81). Canberra, Australia: Commonwealth of Australia.Google Scholar
Beamer, S., & Brookes, M. (2001). Making decisions: Best practice and new ideas for supporting people with high support needs to make decisions. London: Values Into Action.Google Scholar
Bechara, A., & Van Der Linden, M. (2005). Decision-making and impulse control after frontal lobe injuries. Current Opinion in Neurology, 18 (6), 734–739.CrossRefGoogle ScholarPubMed
Bigby, C., Clement, T., Mansell, J., & Beadle-Brown, J. (2009). It's pretty hard with our ones, they can't talk, the more able bodied can participate’: Staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities. Journal of Intellectual Disability Research, 53 (4), 363–376.CrossRefGoogle ScholarPubMed
Bonatti, E., Zamarian, L., Wagner, M., Benke, T., Hollosi, P., Strubreither, W., & Delazer, M. (2008). Making decisions and advising decisions in traumatic brain injury. Cognitive and Behavioral Neurology, 21 (3), 164–175.CrossRefGoogle ScholarPubMed
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3 (2), 77–101.CrossRefGoogle Scholar
Braun, V., & Clarke, V. (2013). Successful qualitative research: A practical guide for beginners. London, UK: Sage.Google Scholar
Browning, M., Bigby, C., & Douglas, J. (2014). Supported decision making: Understanding how its conceptual link to legal capacity is influencing the development of practice. Research and Practice in Intellectual and Developmental Disabilities, 1 (1), 34–45.CrossRefGoogle Scholar
Carney, T. (2015). Supported decision-making for people with cognitive impairments: An Australian perspective? Laws, 4 (1), 37–59.CrossRefGoogle Scholar
Casey, G., Jones, V., & Keyzer, P. (2013). Discover: A resource for people planning for the future. A disabilitycare australia, the national disability insurance scheme help guide. Cannon Hill, Queensland: Endeavour Foundation.Google Scholar
Commonwealth of Australia. (2009). Senate standing committee on community affairs. Canberra, Australia: Commonwealth of Australia.Google Scholar
Commonwealth of Australia. (2013). National disability insurance scheme act 2013. Canberra, Australia: Commonwealth of Australia.Google Scholar
Corbin, J., & Strauss, A. (2008). Basics of qualitative research: techniques and procedures for developing grounded theory. London, UK: Sage Publications.CrossRefGoogle Scholar
Council of Australian Governments. (2006). Council of Australian governments communique (p. 8). Canberra, ACT: Department of the Prime Minister and Cabinet.Google Scholar
Crozier, M., Muenchberger, H., Colley, J., & Ehrlich, C. (2013). The disability self-direction movement: Considering the benefits and challenges for an Australian response. Australian Journal of Social Issues, 48 (4), 455–472.CrossRefGoogle Scholar
Dreer, L.E., DeVivo, M.J., Novack, T.A., Krzywanski, S., & Marson, D.C. (2008). Cognitive predictors of medical decision-making capacity in traumatic brain injury. Rehabilitation Psychology, 53 (4), 486–497.CrossRefGoogle ScholarPubMed
Duncan-Myers, A.M., & Huebner, R.A. (2000). Relationship between choice and quality of life among residents in long-term-care facilities. American Journal of Occupational Therapy, 54 (5), 504–508.CrossRefGoogle ScholarPubMed
Emerson, E., & Hatton, C. (1996). Deinstitutionalisation in the UK and Ireland: Outcomes for service users. Journal of Intellectual and Developmental Disability, 21 (1), 17–37.CrossRefGoogle Scholar
Felce, D. (1996). Quality of support for ordinary living. In Mansell, J. & Ericsson, K. (Eds.), Deinstitutionalisation and community living (pp. 81–96). London, UK: Chapman and Hall.Google Scholar
Finlay, W.M.L. (2008). Promoting choice and control in residential services for people with learning disabilities. Disability & Society, 23 (4), 349–360.CrossRefGoogle Scholar
Fyson, R., & Cromby, J. (2012). Human rights and intellectual disabilities in an era of ‘choice’. Journal of Intellectual Disability Research, 57 (12), 1164–1172.CrossRefGoogle Scholar
Hatton, C., Emerson, E., Robertson, J., Gregory, N., Kessissoglou, S., & Walsh, P. (2004). The Resident choice scale: A measure to assess opportunities for self-determination in residential settings. Journal of Intellectual Disability Research, 48 (2), 103–113.CrossRefGoogle Scholar
Huebner, R.A., Johnson, K., Bennett, C.M., & Schneck, C. (2003). Community participation and quality of life outcomes after adult traumatic brain injury. American Journal of Occupational Therapy, 57 (2), 177–185.CrossRefGoogle ScholarPubMed
Jenkinson, J. (1993). Who shall decide? The relevance of theory and research to decision-making by people with an intellectual disability. Disability, Handicap & Society, 8 (4), 361–375.CrossRefGoogle Scholar
Kim, S., Larson, S.A., & Lakin, C.K. (2001). Behavioural outcomes of deinstitutionalisation for people with intellectual disability: A review of US studies conducted between 1980 and 1999. Journal of Intellectual and Developmental Disability, 26 (1), 35–50.CrossRefGoogle Scholar
Knox, L., Douglas, J., & Bigby, C. (2013). Whose decision is it anyway? How clinicians support decision-making participation after acquired brain injury. Disability & Rehabilitation, 35 (22), 1926–1932.CrossRefGoogle ScholarPubMed
Krefting, L. (1991). Rigor in qualitative research: The assessment of trustworthiness. American Journal of Occupational Therapy, 45 (3), 214–222.CrossRefGoogle ScholarPubMed
Mansell, J., & Ericsson, K. (1996). Conclusion: Integration diverse experience. In Mansell, J. & Ericsson, K. (Eds.), Deinstitutionalisation and community living (pp. 242–253). London, UK: Chapman and Hall.CrossRefGoogle Scholar
O'Connor, B.P., & Vallerand, R.J. (1994). Motivation, self-determination, and person-environment fit as predictors of psychological adjustment among nursing home residents. Psychology and Aging, 9 (2), 189–194.CrossRefGoogle ScholarPubMed
Ponsford, J. L., Sloan, S., & Snow, P. (2012). Traumatic Brain Injury: Rehabilitation for Everyday Adaptive Livind (Second ed.). Hove, UK: Psychology Press.CrossRefGoogle Scholar
Productivity Commission. (2011). Disability care and support, report no. 54. Canberra, Australia: Commonweath of Australia.Google Scholar
QSR International Pty Ltd. (2008). NVivo 8.0. Melbourne: QSR International Pty Ltd.Google Scholar
Reid-Proctor, G.M.L., Galin, K., & Cummings, M.A. (2001). Evaluation of legal competency in patients with frontal lobe injury. Brain Injury, 15 (5), 377–386.CrossRefGoogle ScholarPubMed
Ryan, R., Lopata, T., & Yeomans, J. (2010). Mid-term review: Younger people in residential aged care program. Sydney, NSW: Urbis.Google Scholar
Senate Community Affairs References Committee. (2005). Community affairs references committee: Quality and equity in aged care senate committee report. Canberra, ACT: The Senate.Google Scholar
Soo, C., Tate, R., Hopman, K., Forman, M., Secheny, T., Aird, V., . . . Coulston, C. (2007). Reliability of the care and needs scale for assessing support needs after traumatic brain injury. Journal of Head Trauma Rehabilitation, 22 (5), 288–295.CrossRefGoogle ScholarPubMed
SPSS. (2010). SPSS (version 19.0) [base]. Chicago: SPSS Inc. Retrieved from http://spss.com.Google Scholar
Stancliffe, R.J., & Parmenter, T.R. (1999). The choice questionnaire: A scale to assess choice exercised by adults with intellectual disability. Journal of Intellectual and Developmental Disability, 24 (2), 107–132.CrossRefGoogle Scholar
Strettles, B., Bush, M., Simpson, G., & Gillet, L. (2005). Accommodation in NSW for adults with high care needs after traumatic brain injury. Sydney, NSW: Brain Injury Rehabilitation Unit, Liverpool Health Service.Google Scholar
Stringer, K. (1999). Study into the accommodation needs for young people requiring nursing home level of care. Melbourne, Victoria: Melbourne City Mission.Google Scholar
Tate, R. (2011) Manual for the Care and Needs Scale (CANS). Unpublished manuscript, Rehabilitation Studies Unit, University of Sydney. Revised version 1. Retrieved from http://sydney.edu.au/medicine/rehab/about/JWCRRweb/Care-and-Needs-Scale-Manual-2011.pdf.Google Scholar
Tate, R.L. (2004). Assessing support needs for people with traumatic brain injury: The care and needs scale (CANS). Brain Injury, 18 (5), 445–460.CrossRefGoogle ScholarPubMed
United Nations. (2007). Convention on the rights of persons with disabilities. New York: United Nations. Retrieved from http://www.un.org/esa/socdev/enable/rights/convtexte.htm.Google Scholar
Victorian Government Department of Human Services. (2002). Victorian state disability plan 2002–2012. Melbourne, VIC: Victoria Government.Google Scholar
Wallhagen, M.I., Strawbridge, W.J., Kaplan, G.A., & Cohen, R.D. (1994). Impact of internal health locus of control on health outcomes for older men and women: A longitudinal perspective. The Gerontologist, 34 (3), 299–306.CrossRefGoogle ScholarPubMed
Wehmeyer, M.I. (1996). Student self-report measure of self-determination for students with cognitive disabilities. Education Training Mental Retardation Developmental Disabilities, 32, 282–293.Google Scholar
Winkler, D., Farnworth, L., Sloan, S., & Brown, T. (2011). Moving from aged care facilities to community-based accommodation: Outcomes and environmental factors. Brain Injury, 25 (2), 153–168.CrossRefGoogle ScholarPubMed
Winkler, D., Holgate, N., Sloan, S., & Callaway, L. (2012). Evaluation of quality of life outcomes of the younger people in residential aged care initiative in Victoria. Melbourne: Summer Foundation Ltd.Google Scholar
Winkler, D., Sloan, S., & Callaway, L. (2007). Younger people in residential aged care: Support needs, preferences and future directions. Melbourne: Summer Foundation Ltd.Google Scholar
Winkler, D., Sloan, S., & Callaway, L. (2010). People under 50 with acquired brain injury living in residential aged care. Brain Impairment, 11 (3), 299–312.CrossRefGoogle Scholar
Wood, R.L., & McHugh, L. (2013). Decision making after traumatic brain injury: A temporal discounting paradigm. Journal of the International Neuropsychological Society, 19 (2), 181–188.CrossRefGoogle ScholarPubMed
Young, L. (2006). Community and cluster centre residential services for adults with intellectual disability: Long term results from an Australian-matched sample. Journal of Intellectual Disability Research, 50 (6), 419–431.CrossRefGoogle ScholarPubMed
Young, L., Ashman, A., Sigafoos, J., & Grevell, P. (2001). Closure of the chalinor centre II: An extended report on 95 individuals after 12 months of community living. Journal of Intellectual and Developmental Disability, 26 (1), 51–66.CrossRefGoogle Scholar
Young, L., Sigafoos, J., Suttie, J., Ashman, A., & Grevell, P. (1998). Deinstitutionalisation of persons with intellectual disabilities: A review of Australian studies. Journal of Intellectual and Developmental Disability, 23 (2), 155–170.CrossRefGoogle Scholar