Determination of High Quality Long-Term Outcomes for people with Disabiling Conditions

This paper reports on the methodological development and preliminary results of a project which aims to define the desired long-term outcomes for people with disabilities in a form appropriate to be used for accountability purposes for rehabilitation and other services. Difficulties with current approaches to ensuring accountability are outlined. Particular emphasis is placed on difficulties that arise for disabled people when an inappropriately restricted range of goals are legitimated through the accountability system. Such a restriction is identified as a form of bias. The Concept Mapping System developed by Trochim (1987) is considered as a methodology for avoiding this bias whilst developing criteria for accountability. This method is discussed in terms of its basis in statistical, program evaluation and psychometric theory. Preliminary results of Concept Mapping groups with hospital-based rehabilitation staff are presented. While recognising that further research is necessary to establish how representative these findings are, it is noted that staff working with people with acquired brain injury (stroke and traumatic head injury) had a substantially greater focus on the `meaning' aspects of their clients' lives than did staff working with people with back pain. The proposed methodology for subsequent phases of the project is briefly outlined.