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R - Community Participation

Roadmap: Where Do We Need to Go? comunity participation ENHANCEMENT must proced on thre levels: 1. Develop and implement routine follow up Routine standardized follow-up assessments, to address community participation are needed. Routine follow up is, in itself, a best practice indicator to enable optimal participation. What? Community participation assessments should include an assessment of participation and environmental factors. Recommended is use of the Person-Perceived Participation in Daily Activities (PDAQ),11 part of the RHSCIR Community Follow-up Version 2.0, and the Craig Hospital Inventory of Environmental Factors (CHIEF)8 to minimize time, and to ensure assessment of modifiable aspects of community participation. To further minimize the time requirements, a subset of key indicators could be selected for routine follow-up (e.g., assessment of important roles such as parenting, employment/vocation, etc.). When? Community follow up should be started at the first year following discharge and annually, thereafter. Based on literature (as well as on feasibility/sustainability), follow ups may be spaced out at longer intervals after the first two to five years…10 years, 15 years, etc. How? Individuals with SCI would complete the measures either on-line or by phone. Information from the measures could be used to identify specific services, based on the individual’s needs pertaining to community participation (e.g., follow-up with a TR, physiatrist, vocational counsellor, SCI Canada). 2. Utilize current resources The Rick Hansen Foundation has developed an easy-to-use online tool called planat (formerly known as the Rick Hansen Global Accessibility Map) for individuals with disabilities to submit reviews on the accessibility of buildings and public spaces (e.g. parks, trails, etc.) around the world (www.planat.com). 3. Make decisions based on data from Canadians The SCI Community Survey is a national survey conducted in 2012. Results from this survey will identify priorities for individuals with SCI, and determine how successful the Canadian health and social services system is, at meeting their needs. This information will inform clinical practice, research and policy future directions. Specific examples of areas for further policy development are described in the ‘What’s Needed’ section. Key References Conceptualization and Outcome Measures • Escorpizo R, Graf S, Marti A, et al. Domain sets and measurement instruments on participation and environmental factors in spinal cord injury research. Am J Phys Med Rehabil. 2011;90(11 Suppl 2):S66-78. • Magasi SR, Heinemann AW, Whiteneck GG, Quality of Life/Participation Committee. Participation following traumatic spinal cord injury: an evidence-based review for research. J Spinal Cord Med. 2008;31(2):145–56. • Noonan VK, Miller WC, Noreau L. A review of instruments assessing participation in person with spinal cord injury. Spinal Cord. 2009;47:435–46. • Noreau L, Fougeyrollas P, Post M, Asano M. Participation after spinal cord injury: the evolution of conceptualization and measurement. J Neurol Phys Ther. 2005;3:147– 56. Relationship with Concepts Relevant to Community Participation • Chang FH, Wang YH, Jang Y, Wang CW. Factors associated with quality of life among people with spinal cord injury: application of the International Classification of Functioning, Disability and Health Model. epub ahead of print June 21 2012 Arch Phys Med Rehabil. 2012. http://www.sciencedirect.com/science/ article/pii/S0003999312004315. Accessed October 4, 2012. • Lüthi H, Geyh S, Baumberger ME, et al. The individual experience of functioning and disability in Switzerland--patient perspective and person-centeredness in spinal cord injury. Spinal Cord. 2011;49(12):1173-81. What’s Needed? Future Clinical Directions • Identify which resources and interventions (e.g., educational and technological programs) are useful to individuals and their social networks, to support community participation following SCI • Identify which cognitive-emotional factors, such as self-efficacy and coping styles, predict successful community participation following SCI • Establish mechanisms to transfer content of the community participation assessment (above) to the appropriate provider or group of providers. Future Research • Examine if social and environmental barriers to community participation, following SCI, can be positively affected by changes in policy. For example, evaluate whether making family physician offices accessible (e.g., stairs, door widths) decreases visits to the emergency department • Examine if factors such as age, income, rural/urban, transportation, ethnicity and culture affect community participation following SCI. Future Policy Initiati ves • Promote nationwide legislation that requires accessible transportation across the country • Include criteria related to the definition of accessible work and recreation environments in Canadian disability policy. COMMNUITY PARTICIPATION | PARTICIPATION 191


R - Community Participation
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