Biomedical Engineering Reference
In-Depth Information
expectations of functioning” (WHO and World Bank 2011, p. 21). For all of these reasons,
the
World Report on Disability
(WHO and World Bank 2011) made some recommendations
to improve the availability and quality of data on disability, including (1) the adoption
of the ICF as a universal framework for disability data collection, (2) the improvement
of national disability statistics, (3) the improvement of the comparability of data, and
(4) the development of appropriate tools to fill the research gaps. With regard to the latter
point, the
World Report on Disability
suggested the development of “better measures of
the environment and its impact on the different aspects of disability” (WHO and World
Bank 2011, p. 46) and the coupling of the evaluation of the disability experience with the
measurement of the “well-being and quality of life of people with disabilities” (WHO and
World Bank 2011, p. 47).
Additionally, another crucial point in the field of measurement further complicates the
issue. According to Zola (1993), any attempt to identify standard measures for disabil-
ity reflects the effort to consider disability as a fixed and dichotomous entity more than
anything else. Conversely, Zola's universal model of disability indicated that disability is
a fluid and continuous experience. Accordingly to Zola's point of view, the
World Report
on Disability
repeatedly stressed this point by using the word “experience” in relation to
disability and emphasizing a subjective dimension that is not reducible and not due to
the level of objective measurement of functioning and disability. Disability is not a set
of immutable characteristics that define a person over another or that is predictable by
a medical diagnosis because it is not always a direct consequence of disease; instead, it
is a multidimensional process that lasts a lifetime and involves the physical, psychologi-
cal, and social spheres of individuals. Because this is a multidimensional construct, its
measurement should also be multidimensional. Therefore, an underlying principle of dis-
ability measurement is not even desirable. Instead, a variety of measuring tools and the
flexibility to change the procedure of measurement to adapt them to different people, con-
texts, and purposes provide the most reliable scientific and clinical approach.
In this chapter, we followed the approach stating that the purpose of the measurement
is the guiding principle for the specification of an operational definition and for the choice
of a coherent set of measurement tools. Indeed, it does not define a default set of tools but
points to some guiding principles in choosing and applying a set of measures and in sug-
gesting some tools that fit the ultimate purpose of the ATA process, i.e., “to address, in a
specific context of use, the personal
well-being
of the user through the best
matching
of user/
client and assistive solution” via “clinical measures, functional analysis, and psycho-socio-
environmental evaluations” (please see
The Best Measure: Is There an Elixir of Measurements
for Turning an Assessment into Gold?
). The tools proposed and described in this chapter are
from the following two major types: measures of individual functioning and outcome
measures. The choice of the tools presented is intended to provide measures that allow the
attainment of objective and comparable data in ways that most effectively seize the subjec-
tive dimension of the experience of disability.
Summary of the Chapter
This chapter is divided into three main sections. The first focuses on what individual func-
tioning measures should be used with a focus on the principle stating that disability is a
multidimensional construct and does not have an underlying principle of measurement
