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Perspectives in Rehabilitation

Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability

ORCID Icon & ORCID Icon
Pages 434-441 | Received 11 Dec 2017, Accepted 05 Jul 2018, Published online: 18 Nov 2018

References

  • Disabled World [internet]. [cited 2017 Nov 11]. Available from: https://www.disabled-world.com/disability/statistics
  • Australian Institute of Health and Welfare. Canberra (ACT): Australia’s welfare; 2013. (AIHW).
  • US Census Bureau. Washington (DC): American Community Survey (ACS); 2014.
  • United Nations (UN). Geneva. Convention on the Rights of Persons with Disabilities; 2006.
  • Australian Law Reform Commission. Sydney (NSW): Equality, capacity and disability in Commonwealth laws (DP 81); 2014.
  • Mason A. Foreword. Univ N S W Law J. 2013;36:170–174.
  • Gordon R. The emergence of assisted (supported) decision-making in the Canadian law of adult guardianship and substitute decision-making. Int J Law Psychiatry. 2000;23:61–77.
  • Gooding PM. Supported decision-making: a rights-based disability concept and its implications for mental health law. Psychiatr Psychol Law. 2013;20:431–451. 2012;
  • Bigby C, Whiteside M, Douglas J. Providing support for decision making to adults with intellectual disability: perspectives of family members and workers in disability support services. J Intellect Dev Disabil. 2017;1–14.
  • Carney T. Participation and service access rights for people with intellectual disability: a role for law. J Intellect Dev Disabil. 2013;38:59–69.
  • Carney T. Clarifying, operationalising and evaluating supported decision making models. Research and Practice in Intellectual and Developmental Disabilities. 2014;1:46–50.
  • Carney T, Beaupert F. Public and private bricolage-challenges balancing law, services and civil society in advancing CRPD supported decision making. Univ N S W Law J. 2013;36:175–201.
  • Douglas J, Bigby C, Knox L, et al. Factors that underpin the delivery of effective decision-making support for people with cognitive disability. RAPIDD. 2015;2:37–44.
  • Kohn NA, Blumenthal JA. A critical assessment of supported decision-making for persons aging with intellectual disabilities. Disabil Health J. 2014;7:S40–S43.
  • Law Commission Ontario (LCO) Toronto (Ontario): Legal capacity, decision-making and guardianship. Discussion Paper May 2014. 2014.
  • Arksey H, O'Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8:19–32.
  • Bigby C, Douglas J, Carney T, et al. Delivering decision-making support to people with cognitive disability–what has been learned from pilot programs in Australia from 2010–2015. Aust J Soc Issues. 2017;52:222–240.
  • Mental Capacity Act. Code of Practice. (2005). [cited 2018 May 28]. Available from: http://www3.imperial.ac.uk/pls/portallive/docs/1/51771696.PDF.
  • Government of Ireland. Dublin (IE) Assisted Decision-Making (Capacity) Act. 2015.
  • Bigby C. Moving on without parents: Planning, transitions and sources of support for older adults with intellectual disabilities. New South Wales/Baltimore: Mclennan + Petty/P H Brookes; 2000.
  • Bigby C, Knox M. ‘I want to see the Queen’, the service experiences of older adults with intellectual disability. Australian Social Work. 2009;62:216–231.
  • Douglas J, Dyson M, Foreman P. Increasing leisure activity following severe traumatic brain injury: does it make a difference? Brain. Impair. 2006;7:107–118.
  • Douglas J. Placing brain injury rehabilitation in the context of the self and meaningful engagement. Semin Speech Lang. 2010;31:197–204.
  • Douglas J. Conceptualizing self and maintaining social connection following severe traumatic brain injury. Brain Injury. 2013;27:60–74.
  • ] Campbell M, Fitzpatrick R, Haines A, et al. Framework for design and evaluation of complex interventions to improve health. BMJ. 2000;321:694–696.
  • Craig P, Dieppe P, Macintyre S, et al. Developing and evaluating complex interventions: the new medical research council guidance. BMJ. 2008;33:a1655.
  • Bigby C, Douglas J. Sydney, NSW. Support for Decision Making: a Practice Framework; 2016. Living with Disability Research Centre, La Trobe University http://hdl.handle.net/1959.9/556875
  • Bigby C, Whiteside M, Douglas J. Supporting people with cognitive disabilities in decision making: processes and dilemmas. Melbourne (VIC): Living with Disability Research Center, La Trobe University; 2015.
  • Abreu B, Zhang L, Seale G, et al. Interdisciplinary meetings: investigating the collaboration between persons with brain injury and treatment teams. Brain Injury. 2002;16:691–704.
  • Agran M, Storey K, Krupp M. Choosing and choice making are not the same: asking “what do you want for lunch?” is not self-determination. J Vocat Rehabil. 2010;33:77–88.
  • Burgen B. Women with cognitive impairment and unplanned or unwanted pregnancy: a 2-year audit of women contacting the pregnancy advisory service. Australian Social Work. 2010;63:18–34.
  • Hill S, Wooldridge J. Informed participation in TennCare by people with disabilities. J Health Care Poor Underserved. 2006;17:851–875.
  • Knox L, Douglas J, Bigby C. ‘The biggest thing is trying to live for two people’: spousal experiences of supporting decision-making participation for partners with TBI. Brain Injury. 2015;29:745–757.
  • Knox L, Douglas J, Bigby C. Becoming a decision-making supporter for someone with acquired cognitive disability following TBI. RAPIDD 2016;3:12–21.
  • Knox L, Douglas J, Bigby C. “I won't be around forever”: understanding the decision-making experiences of adults with severe TBI and their parents. Neuropsychol Rehabil. 2016;26:236–260.
  • Tasky K, Rudrud E, Schulze K, et al. Using choice to increase on-task behavior in individuals with traumatic brain injury. J Appl Behav Anal. 2008;41:261–265.
  • Ellem K, O'Connor M, Wilson J, et al. Social work with marginalised people who have a mild or borderline intellectual disability: practicing gentleness and encouraging hope. Australian Social Work. 2013;66:56–71.
  • Caldwell J. Leadership development of individuals with developmental disabilities in the self‐advocacy movement. J Intellect Disabil Res. 2010;54:1004–1014.
  • Garcia-Iriarte E, Kramer JC, Kramer JM, et al. ‘Who Did What?’ A participatory action research project to increase group capacity for advocacy. J Appl Res Intellect Disabil. 2009;22:10–22.
  • Kjellberg A. More or less independent. Disabil Rehabil. 2002;24:828–840.
  • Mill A, Mayes R, McConnell D. Negotiating autonomy within the family: the experiences of young adults with intellectual disabilities. Br J Learn Disabil. 2010;38:194–200.
  • Renblad K. How do people with intellectual disabilities think about empowerment and information and communication technology (ICT)? Int J Rehabil Res. 2003;26:175–182.
  • Timmons J, Hall A, Bose J, et al. Choosing employment: factors that impact employment decisions for individuals with intellectual disability. J Intellect Dev Disabil. 2011;49:285–299.
  • Antaki C, Finlay W, Walton C, et al. Offering choices to people with intellectual disabilities: an interactional study. J Intellect Disabil Res. 2008;52:1165–1175.
  • Rossow-Kimball B, Goodwin D. Self-determination and leisure experiences of women living in two group homes. Adapt Phys Activ Q. 2009;26:1–20.
  • Schelly D. Problems associated with choice and quality of life for an individual with intellectual disability: a personal assistant's reflexive ethnography. Disabil Soc. 2008;23:719–732.
  • Charmaz K. Constructionism and the grounded theory method. In: Holstein JA, Gubrium JF, editors. Handbook of constructionist research. New York (NY): Guilford Press; 2007. p. 397–412.
  • Bigby C, Bowers B, Webber R. Planning and decision making about the future care of older group home residents and transition to residential aged care. J Intellect Disabil Res. 2011;55:777–789.
  • Bigby C, Webber R, Bowers B. Sibling roles in the lives of older group home residents with intellectual disability: working with staff to safeguard wellbeing. Australian Social Work. 2015;68:453–468.
  • Douglas J, Drummond M, Knox L, et al. Re-thinking social relational perspectives in rehabilitation: traumatic brain injury as a case study. In: McPherson K, Gibson BE, Leplege A, editors. Rethinking rehabilitation: theory and practice. Boca Raton, FL: CRC Press; 2015. p. 137–162.
  • Knox L, Douglas J, Bigby C. Whose decision is it anyway? How clinicians support decision-making participation after acquired brain injury. Disabil Rehabil. 2013;35:1926–1932.
  • Knox L, Douglas J, Bigby C. “I’ve never been a yes person”: decision-making participation and self-conceptualisation after severe traumatic brain injury. Disabil Rehabil. 2017;39:2250–2260.
  • Bigby C, Douglas J, Carney T, et al. Effective Decision Making Support for People with Cognitive Disability 2015; Australian Research Council Linkage Project (LP150100391).
  • Alberta Government. Edmonton (Alberta). Adult Guardianship and Trusteeship Act. 2008.
  • Australian Government. Canberra (ACT). National Disability Insurance Scheme Act. 2013