Disabilities | Free Full-Text | Conceptual Models of Disability: The Development of the Consideration of Non-Biomedical Aspects
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The third generation of conceptual models (Table 3) has a common origin in the reform process of the ICIDH. They generally represent a paradigm shift and do not include the classical, linear disablement process [7,14,65,66], yet are quite different in their composition. The International Classification of Functioning, Disability and Health (ICF) by the WHO is currently the most broadly known conceptual model of disability; in preliminary versions the framework was titled ICIDH-2. The Disability Creation Process (DCP) was created by researchers from Quebec, who were initially also involved in compiling the ICF but later decided to separately develop their own approach, also called the Quebec model [67]. While the first version of this approach was proposed in 1991 [68], which already was more progressive than the conceptual models of that time, the DCP considered here is the latest version [67], belonging to the third generation, since, like the ICF, it grew out of the reform of the ICIDH. Both approaches provide codes or surveys to classify and rate disability. The two other identified conceptual models of this generation were created as extensions of other models, and are smaller in scope. While the first focuses on the individual dimension, the second concentrates on the physical environment.
4.3.1. Main Components
Disability and functioning are, in the ICF, rooted in the context of health [35]. Therefore, health condition, which means a disease, disorder, or injury, as well as other relevant natural phenomena such as pregnancy or age [14,35], is in some sense still conceptualized as the main cause of disability and thus the first component of this non-linear, interactionist model [69] (Figure 3). Other components are called body functions and structures. Body functions are seen as natural and normal functions of physical and psychological body systems [35]. Body structures are defined as “anatomical parts of the body such as organs, limbs and their components” [35] (p. 12). The negative aspects of those domains are titled impairments, and they are interpreted as significant deviations from biomedical standards or losses [35].
Furthermore, the ICF introduces two completely new components representing life areas: domains of activities and participation [10,70]. Activities represent functioning on the level of the whole individual person and not just the body [11,35]. Negative aspects of activities are called activity limitations and defined as “difficulties an individual may have in executing activities” [35] (p. 14). This means quantitative and qualitative deviations regarding the mode and extent of activity performance compared to people without health conditions. Participation is the societal aspect of functioning and is simply defined as “a person’s involvement in a life situation” [35] (p. 213) and also described as the result of the interaction between an individual and their environment [71]. The negative aspects are called participation restrictions, and represent the difference in the extent of participation as compared to persons without impairments [10,35].
As in IOM2 or the CMPH, the relationship between personal and environmental factors forms the center of the DCP (Figure 4). The components collectively labeled as personal factors are conceptualized at the time of measurement in vitro, i.e., independent of the context and under standardized conditions [7]. A component organ system is defined as “[a] group of biological [body] components sharing a common function” [72] (p. 6). Impairments are, accordingly, conceptualized biomedically as deviating changes from an organ system’s normal integrity [67]. The next personal component capability refers to very basic actions [67]. It is defined “as a person’s potential to accomplish a mental or physical activity” [72] (p. 7) and hence is similar to Nagi’s functional limitations. The negative aspect of this component is titled disability [67]. Unlike all other models, the DCP also considers identity factors such as gender, skin color, or sexual orientation among the main components of the disability relation [72]. They are principally treated as intrinsic attributes of the person and are connected to their “values, beliefs, life history and so forth” [67] (p. 28). Personal identity factors can function as barriers to, or facilitators for, participation [67].
In addition to these personal factors, the Quebec model recognizes the environmental factors as full-fledged components of the disability relation [7,73]. They are defined as “physical or social dimensions that determine a society’s organization and context” [72] (p. 7). Their influence on social participation can extend from optimal facilitator to complete obstacle [7,67], and must be assessed for specific persons. The authors developed a taxonomy that distinguishes between politico-economic, sociocultural, and natural environmental factors [72] and the micro, meso, and macro levels. Thus, according to the DCP, environmental factors span the gamut from the physical and social aspects of a person’s vicinity, through organizational cultures, to systems of laws and prejudices [7,67].
The result of the interaction between personal factors and the environment in concrete situations manifests in life habits [28]. Life habits are daily activities and social roles valued by the person or their sociocultural context. They are the result of processes of habitualization and learning and are inextricably linked to specific cultural meanings and conditions [67]. Performance regarding life habits is seen as a measure of social participation as well as of the achieved disability rights [7,24,67]. The extreme poles of life habit scale are known as the social participation situation and disabling situation. Contrary to the in vitro nature of personal components such as capability, actual performance is conceptualized in vivo in natural situations.
The Integrated Conceptual Model for Rehabilitation Outcome Research (henceforth ICMROR) [74] was published shortly before the ICF and supplements the ICIDH components with components referring to the subjective point of view. Impairment is extended with somatic sensation, such as pain and disability, with perceived health such as satisfaction with health or functioning, and handicap with life satisfaction, such as satisfaction with role performance and social functioning. The final component, happiness, is connected to both handicap and life satisfaction, but unlike all other components not reducible to health, although influenced by it [74].
The model for Physical Functioning Assessment in your Environment (henceforth PF-E) [75] was published as an extension of the ICF. It conceptualizes physical functioning performance as being dependent on the components home and neighborhood environment, as well as individual capacity, and cope and compensation strategies [75].
4.3.3. Evaluation
The ICF’s seemingly intuitive conceptual distinction between activities on the individual level and participation on the social level seems similar to that of functional limitations and disability in the older models at first glance. However, the ICF coding system lists the same domains for both components, leaving it up to the user to decide which domain counts as activity and which as participation [35]. This is an abstention from a clear demarcation. Additionally, just like older models, the ICF groups individual and external environmental factors together as background for the other components. Therefore, the realms of the person and of the social environment are both separated and conjoined [14]. This conceptual ambiguity and complexity has been sharply criticized in the literature [6,7,69,73] and [77] quoted in [14] (p. 61). Others have accused the ICF of still favoring biomedical components because the provided codes and coding instructions for body functions and structures are much more detailed and elaborated than those for activity and participation [28,69,78]. Additionally, the existence of a health condition component as well as many of the listed example cases suggests that despite the interactionist conception, impairments and diseases are still somewhat seen as the main causes of disabilities [69] and, therefore, the ICF’s break with the ICIDH might not be as complete as sometimes claimed.
Further, some criticize the WHO framework for not conceptually stressing the nature of disability as a relation between the person and the environment as clearly as IOM2 or the DCP [28].
Accordingly, the DCP authors see their strict separation of the personal and environmental aspects of the disability relation as a big advantage in construct clarity vis a vis the ICF [7]. However, their output component is also ambiguously located between the individual and the environment [7]. While Fougeyrollas et al. [67] (p. 31) claim in one place that life habits are a part of the person, they insist in another that they are not an intrinsic part of the person. However, what is measured is not the life habits, but the performance of them in concrete situations, so their fundamental disability conceptualization is situational. This contributes to the idea expressed by Levasseur et al. [73] that equates life habits and situations, but situations do not conceivably seem to be interpretable as part of a person. Moreover, the DCP divides life habits into daily activities and social roles.
The ICF also does not specify whether the listed environmental domains are to be treated as barriers or facilitators, and if they are coded for their presence or absence. So, in a particular situation, users could interpret the presence of stigma as a barrier with a negative impact, or the absence of stigma as a facilitator with a positive effect [35]. This mirrors a general dilemma in the sociology of health, namely, the often difficult distinction between disease prevention orientation on the one hand and health promotion orientation on the other [79,80]. Additionally, while the ICF aspires to be a biopsychosocial model, the psychological aspect is underrepresented [81], only conceptualized as a background factor and not part of the coding scheme. As Hirschberg [69] points out, variability of cultural meaning, the given reason for the omission of the personal factors’ coding scheme, also exists regarding several of the activity and participation domains and environmental factors.
An ambiguity of the DCP is use of the term disability. First, an individual’s lack of bodily or mental ability is called a disability, and second, the entire disability concept [24] is also called a disabling situation, and hence, a disability is one part of the relation constituting a disabling situation. There is also a circularity, especially if the model as a whole is taken to be a model of disability, which the authors also proclaim [67].
The ICMROR uses happiness as the output component without defining it. It is not clear if it is meant to be a purely subjective appraisal or not. The authors also do not delineate it clearly from life satisfaction. The creators of the PF-E model list the utilization of assistive devices and human help as compensation strategies, yet the availability of these resources is also an aspect of the environment. The authors hint at this ambiguity when they say that changing the environment or moving home can be interpreted as a coping strategy that finally results in a new environment.
Even though the ICF is, according to its title, a classification of functioning, disability and health, and employs terms such as health conditions and health domains, it does not define health itself and does not unambiguously specify the relationship between functioning/disability and health [69].
Both conceptual models have their origins in the reform process of the ICIDH, necessitated by criticisms for being so closely tied to the biomedical model of disability, and starting in the early 1990s [24,60,65,82]. Different aspects of the reform process were delegated to centers in different countries [68,69]. People with disabilities were involved in this process, first ad hoc and then more and more [6,60]. The Environmental Task Force (ETF) was created to conceptually work on the environmental aspects of disability. A majority of its members were people with disabilities and disability rights activists [78].
Disability researchers from Quebec, a region with progressive disability politics, were charged with overhauling the component handicap. In the context of this reform process the first versions were proposed in the early 1990s [68]. Because of emerging differences of opinion, the Québécois pursued their model independently [7,24,67].
The ICF was created to aid the collection and analysis of data, thereby supporting the communication of diverse stakeholders [10,14,83]. The authors of the DCP primarily wanted to effectuate a de-stigmatization of people with functional differences and promote their human rights [7].
Therefore, the model was made to assist in transforming environmental barriers into facilitators, so that people with disability can realize their human rights.
While the ICF pursues a holistic, biopsychosocial understanding of functioning and disability, it still sees a health condition that includes non-pathological states, as a conditio sine qua non for a disability [4,35,70]. The authors of the ICF also point out that the labels can be stigmatizing, which is why they use neutral ones, and insist that situations and not persons are classified [35].
Both models are universally applicable and not only to the separate minority of people explicitly labeled as disabled. This is the case for the ICF because of its broad interpretation of health conditions. It is true for the DCP because it does not have a disease or pathology component, and it follows a human development approach that sees impairments as natural and in that sense a normal aspect of a human being’s lifetime development [67]. In both models, all components are named neutrally, and users can rate their impact as positive or negative. However, the actual measurement is mainly negative, i.e., users should code for the presence or absence of problems, deviations, or disabilities, especially in the ICF [69,78,84].
In both models, impairments are interpreted as deviations from biomedical standards, but these objective norms are understood in a purely statistical and non-normative sense [7,35], which means that they are not necessarily bad per se, and thus even could be positively affirmed [55]. A sociocultural construction of the category of impairment as is posited by the cultural model of disability [56] is not discussed. Sociocultural influences on the perceived disability status are captured in both models under the umbrella of environmental factors. There is, however, one difference regarding the sociocultural specificity. The DCP authors stress that life habits, the component in which disability manifests, are socioculturally embedded. In contrast, the domains of activity and participation, i.e., the corresponding ICF components, are conceptualized as cross-culturally valid, an assumption doubted for several domains by Hirschberg [69].
Some authors have criticized the ICF and compared it to the ICIDH for its focus on the health context and for conceptualizing impairments as objective deviations [73,85,86]. Two of the DCP authors, Fougeyrollas and Grenier [24], criticize the ICF for remaining too tied to the biomedical model, and they argue that the absence of the mutual exclusivity of activities/person and participation/society goes against the sharp distinction of the social model and might lead to blaming people with disabilities for their disadvantages. The ICF considers the environment only as a context factor. However, context factors are also named components, and the ICF gives more weight to them than do previous models. This is also illustrated by the numerous domains of possible facilitators or barriers listed.
Additionally, while in the ICF no component is called disability, the word is used as an umbrella term for the negative aspects of impairment of body functions and structures, activity limitation, and restrictions of participation [35]. Therefore, disability is the opposite pole of functioning and thus interpreted at least somewhat negatively. However as mentioned above, the ICF also points out at the same time that the deviations of impairments such as deafness are purely statistical. So, in spite of the association with negative functioning, the ICF does not sharply contradict the possibility of affirming impairments as parts of one’s identity [54,55].
This ICF conception of disability as an umbrella term also means that impairments are kinds of disabilities, which counteracts the strict separation of the social model. In the same vein, the DCP calls biomedical functional limitations of individuals disabilities. All in all, while remaining part of the health paradigm, the ICF follows a holistic picture of health that gives much weight to environmental aspects and is further away from strictly biomedical and economic conceptions of disability than previous models, while not completely distancing itself from them. The DCP goes further, it abstains from a disease category, considers more non-biomedical aspects, and gives more weight to the environment than other conceptual models.
The other two models of this generation both come out of clinical rehabilitation research, are smaller in scope, and capture the disability phenomenon less holistically. While the ICMROR captures subjective aspects, it does not represent the environment as a separate component, and thus the relational nature of disability. The PF-E only considers strategies for coping with or compensating for functional deficits as non-biomedical individual aspects. Additionally, with physical functioning in the narrower sense instead of a broader concept representing social inclusion as the output component, the environmental factors listed concern the physical environment, but not structural aspects or forms of discrimination. Further, the fact that manipulating or changing the environment is seen as a coping strategy puts the onus back on the individual to change his or her environment.
The biomedical dimension is represented by the main components of body functions and structures (ICF), organ systems and capabilities (DCP), impairment and disability (ICMROR), or capacity and performance (PF-E). While the ICF recognizes (pathological and non-pathological) health conditions, the DCP contains functional risk and protective factors belonging to this dimension [67]. Under the rubric of activity, the ICF also lists basic actions that belong to this biomedical dimension.
Unlike all the other models, the ICMROR contains three components that represent the subjective dimension of the disablement process: somatic sensation, perceived health, and life satisfaction. The authors of the ICF stress that this subjective dimension should be emphasized more prominently in a future version, e.g., via a measuring construct for satisfaction with participation or other links with subjective well-being concepts and measures [35]. Identity factors such as sex or age are conceptualized as main components of the personal factors in the DCP and context factors of the personal background relevant to disability in the ICF. The coping and compensation strategies of the PF-E also refer to this dimension.
The components of activity (ICF) and life habits (DCP) are not unambiguously matchable to any one of these dimensions. The former refers in the ICF to the individual part of functioning and comprises domains that are mainly an individual’s activities and, therefore, belong to this dimension. DCP’s component life habits also stretches from the individual to the social realm [7]. However, the performance of daily activities, and especially the related problems, belong to the individual dimension.
The societal dimension of the disability phenomenon is primarily represented by the environment, which is conceptualized as a main part of the disability relation in the DCP, and the PF-E and as a contextual factor in the ICF. Additionally, the output components representing social participation mainly belong to this dimension. The ICF’s component of participation as the social aspect of functioning, at least at the conceptual level, as well as life habits, at least to the extent that they pertain to social roles, belong to the social realm. Moreover, DCP’s environmental risk or protective factors are located in the realm of the partly socially created environment. The component handicap in the ICMROR also belongs to the social dimension.
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