Sage Journals: Discover world-class research

Abstract

Current criticisms of the International Classification of Function, Disability and Health (ICF) are focused on its activity/participation component and on its conceptual basis. I propose structural and conceptual changes. (1) The components would be body structure, body function, intent, actual environment, and participation. (2) Intent would be linked to the concept of self-agency, and its codes would have two qualifiers associating it with capability and strength of willed activity. (3) All activity/participation codes of the original ICF would be moved to the modified ICF's participation component. This component is based on interaction between intent and environment, and it is linked to the concept of joint agency. (4) A new entity, scene setting, represents the sum total of all components' codes involved in a given act of participation. (5) Additional constructs are suggested to elucidate the relations between intent and environment that allow enactment of a given act of participation. The modified ICF is consistent with current concepts of disability and unambiguous in distinctions between body function, activity, and participation. There are no significant alterations in the original ICF codes.

Keywords

activity disability environment ICF individual agency intent joint agency participation

Background

The International Classification of Functioning, Disability and Health (ICF)¹ was finalized and formally adopted by the WHO as a member of its family of classifications in 2000. Like its predecessor, the International Classification of Impairments, Disabilities and Handicaps (ICIDH),² it is not only a classification scheme but also a theoretical framework to understand the phenomenon of disablement.³ The ICIDH biopsychosocial foundation⁴ has been retained as a theoretical framework for the ICF. The ICF is now widely and globally utilized, yet there are concerns about its articulation with current conceptualization of disability and about the ambiguity of its activity/participation component. The former concern is structural: ICF retains some of the personalized approach akin to the medical model that has been attacked in the ICIDH⁵ because its structure does not fit with the contemporary concept that disability is produced by an interaction between person and environment.⁶ The latter concerns the difficulties encountered in distinguishing activity from participation. This article proposes a solution to these two concerns.

Before presenting that solution, I will briefly recall the structural and conceptual evolution that led to the ICIDH and ICF. In the 1960s and 1970s, increasing prevalence of chronic diseases led physicians and medical sociologists to focus on the social consequences of diseases⁷ and WHO to commission the development of ICIDH² as an extension of the International Classification of Diseases (ICD) in the psychosocial and social areas, with three components of impairment, disability, and handicap (social disadvantage). Then, in the 1980s and 1990s, disability movements and scientific groups contributed to new attitudes toward disability: disability was conceptualized as part of a continuum of functioning, and social disadvantage was not seen as a necessary feature of disability. Participation was highlighted.⁸ This led to the development of ICIDH-2⁹ that replaced negative connotations by neutral ones: impairment, disability, and handicap (social disadvantage) became body structure and function, activity, and participation, respectively. Concern remained about the lack of recognition of environment as a major contributor to disability or ability, and discussions that culminated at a meeting in Madrid in 2000¹⁰ led to the ICF's four components: body structure, body function, activity/participation, and environment, in which activity and participation were joined into one component.

The distinction between activity (A) and participation (P) and of their predecessors, disability and handicap, respectively, had been central to the development of models of disability from the early Nagi model⁷ and from Wood's early ICIDH model,^2,3 in which disability was at the individual level and handicap at the societal level. Even the ICF specifies that A “represents the individual perspective on functioning” and P “represents the societal perspective of functioning.”^1(p213) Yet, the definition of A as “the execution of a task or act by an individual”^1(p10) is clear and consistent with its usual interpretation in rehabilitation disciplines, but P's definition “involvement in a life situation”^1(p10) is open to interpretations. An operational distinction between A and P was not resolved in 2000 at the time of implementation of ICF into an actual WHO classification.¹⁰ A compromise was adopted. While activity (A) and participation (P) were joined into one component, ICF users were given four options to distribute A and P among domains and codes: distinct sets of A and P domains (no overlap), partial overlap, detailed categories as A and broad categories as P, and same domains for A and P (ie total overlap).^1(pp234-237)

Recent attempts to resolve this issue conceptually and operationally have focused on P as “social participation” and have proposed operational criteria to differentiate activity and participation.^{11

13} Clearly, their success depends upon a clear and acceptable concept of social participation. Thorough discussion of this concept from a theoretical^11,12 and instrumental perspective¹³ reveals considerable variation in definitions proposed by researchers and other stakeholders.^12(App. ¹⁾ Further, different attributes of social participation are highlighted by different lay and professional respondents or authors^12(App. ^2),14,1S or different stakeholders.¹⁶ Several authors have proposed social role as the unifying aspect of participation.^11,13,17,18 This provides continuity with the various domains of P (eg work, school, community). However, it has several drawbacks. It neglects participation in the physical environment. It does not include forms of participation in the social environment that are not related to social roles. Engagement in social roles might put too much emphasis on set social roles as opposed to subjective constructions of one's relation to society, and it may lead to new forms of discrimination when over time participation becomes increasingly associated with productivity¹⁹ or to stress associated with pressures to conform to societal roles.²⁰

Participation is assessed in ICF with its qualifier of performance, which describes “what an individual does in his or her current environment”^1(p123) and which is graded according to degree of difficulty. This is a very broad definition that is open to several interpretations. However, it is usually seen as the ability to perform tasks and roles in a manner congruent with societal expectations. This fits with the social participation concept and emphasis on engagement in social roles. However, a more complex analysis of performance emerges from recent studies. A review of instruments for arm-hand activity assessment in persons with hemiplegia contrasted capacity for the highest level of functioning in a test environment, perceived performance based in part on client's perspective, and “actual” performance, which reflects the client's real functioning in daily life and may be captured, for instance, by video observation.²¹ Further, persons with disabilities may develop alternative ways of performing activities that do not fit the socially accepted “occupational form”²² but may accomplish their purpose.

There is now a substantive body of knowledge on subjective assessment of participation based on interview or focus group studies. For instance, content analysis of definitions of social participation in literature on aging found six constructs: doing activity in preparation for connecting with others, being with others, interaction with others without doing a special activity with them, doing a special activity with others, helping others, and contributing to society.²³ Again, a meta-analysis of perspectives of individuals with aphasia and stakeholders listed seven overarching themes: (1) participation, (2) meaningful relationships, (3) support, (4) communication, (5) positivity, (6) independence and autonomy, and (7) living successfully with aphasia as a journey over time.²⁴ Several reviews show that performance is only one goal in participation and that others related to values, meaning, and freedom from socioeconomic constraints, social capital, or networking are often equally or more important.^12,25 Two groups of authors have attempted to organize objective and subjective assessments of participation into broad patterns. Brown^26,27 compares the insider and outsider perspectives on situations of disability. The insider's perspective refers to the person's subjective response to a situation. Two elements are significant in that response: importance and saliency, ie what is important to the person and how salient is it in the current situation of the person? The importance and salience of the values and goals of the insiders may be different from those of the outsiders. Both must be taken into account in assessing and planning outcomes. Heinemann et al²⁸ analyzed the literature on participation and the results of qualitative focus groups of disabled persons. Three aspects of participation emerged: (1) engagement, (2) evaluation of subjective ratings of participation, and (3) participation enfranchisement. The latter is defined as “a set of perceptions and values that give meaning to participation and that apply across domains; an assessment of whether the community actually values participation of the person is a significant element of participation enfranchisement.”

The literature on instruments to measure participation reflects these issues. In a systematic review of participation instruments, Eyssen et al¹³ found that three participation levels— problem or difficulty, accomplishment, and satisfaction—were represented in 53, 31, and 9% of participation items, respectively. A few instruments highlight subjective (insider) evaluations of participation, such as the Canadian Occupational Performance Measure,²⁹ Participation Objective, Participation Subjective (POPS),³⁰ or participation enfranchisement.²⁸

Another criticism of ICF, which has received far less attention, is based on action theory. Action theory posits that an act depends on the will to perform it. There is no mention in ICF of the individual's will to engage in an activity or participatory act, and ICF was criticized by Nordenfelt on that basis.³¹

Another major objection to ICF is its presentation of participation as an attribute of the person that may be influenced by the environment as contextual factor^1(p11) rather than as the interaction between person and environment, as in the Disability Creation Process (DCP).⁶ Such assignment of participation to the person leads to overemphasis on personal factors and neglect of environmental ones in assessing restriction or facilitation of participation, “as it does not fulfill the promise of conceptual approaches inspired by the social model of disability.”³² This is consistent with empirical studies^32,33 showing a low association of participation with environmental factors, and with a study that did not include environmental barriers and facilitators as determinants of participation in visually impaired adults.³⁴ Conversely, ethnographic studies of mentally disabled adults,³⁵ aged disabled adults,³⁶ and disabled children and their parents³⁷ showed that environmental factors were the major determinants of participation. Therefore, enhancing the role of the environment in ICF may be needed to remove a structural bias against it.

Since the ICF is a “snapshot,” its codes/qualifiers apply to a given moment of time. However, the actual environment and the actions of the person are dynamic entities. They respond to each other in various ways: there may be an immediate outcome of the interaction that produces the participatory act or there may be serial interactions³⁸ that are multistep processes. Noreau and Boschen,³² building on Lawton's equation of behavior in aged individuals, B = f(P, E, P × E) where P is person, E is environment, and P × E is the interaction between person and environment, suggest that participation is a function of a dynamic interaction between person, environment, and person-environment interactions that take place in the environment component before the act of participation emerges at a given point in time.

Finally, most research discussions of participation or assessments of participation questionnaires ask a “what” question: what is participation or what is optimal participation? Very few have dealt with the “how” question: how can participation that is satisfactory to the person and/or therapist be enabled? Recent studies show that this issue of enablement is very much in the mind of those who approach participation from the insider perspective. For example, in a scoping review of parents' actions, challenges, and needs while enabling participation of children with a physical disability, two major themes emerged: the parents enable and support performance of meaningful activities, and they enable change in and use of the environment. Changing the environment involved networking to establish needed connections, educating other participants, advocating for resources, and creating opportunities. Challenges to change included attitudes of others, insufficient system support, financial barriers, lack of time, barriers in natural and built environment, unmet service and information needs, inadequate equipment and environmental adaptations, and lack of social networks.³⁹

In summary, four issues must be considered in reconceptualizing ICF, namely, reconceptualization of participation, introduction of intent in the classification scheme, reconceptualization of the environment, and addressing the issue of enablement.

Objective

The objective of this article is to propose a conceptual and structural modification of ICF that addresses these issues subject to the following requirements: a.

The code structure of ICF shall be preserved. No codes shall be removed, nor new codes added, with exceedingly rare exceptions.

The components of ICF form a continuous flow from body structure all the way to participation (notwithstanding more minor influences in reverse direction or skipping a component).

Conceptual changes will be mediated by addition of new qualifiers.

The Proposal

Structure

I propose five ICF components, namely, (1) body structure, (2) body function, (3) intent, (4) (actual) environment, and (5) participation.

Body structure refers to the nature, organization, and connections of different constituents of the body at different levels of magnitude (macro, micro, subcellular, and molecular).

Body function is an action or thought compatible with the dynamics of body structure, ie feasible within the limits of the constraints imposed by that structure (or, conversely, facilitated by that structure).

Intent refers to the person's will to express a thought or have an activity. It includes all activities and participation codes of the original ICF preceded by “person's intent to exercise activity….”

Environment is the actual physical/social environment of the person at the time of exercising his/her intent to act.

Participation is the outcome of the interaction between the person and the environment. It includes all activities/participation codes of the original ICF.

Graphic Representation of the Modified ICF

The graphic representation of the modified ICF is shown in Figure 1.

Figure 1.

Structure of the modified ICF^*.

The modified ICF's upper section consists of five components. The lines between components correspond to interactions among them. The main mode of interaction considered in this article is unidirectional, from left to right. Thus, the important interaction between intent and environment, the outcome of which is participation, fulfills the conceptual requirement that participation is produced by an interaction between person and environment.⁶ Yet, interactions among other components are also significant. Body structure may facilitate, hinder, or abolish function. Disturbed function, such as the functional effects of intensive cancer chemotherapy, may have profound effects on intent. Finally, reverse interactions among components occur: participation challenges may lead to changes in the environment; features of the environment may affect a person's intent; and functional deficiency may cause body structure changes (for instance, osteoporosis may occur after a long period of immobility).

The lower section of the modified ICF consists of “scene setting.” Scene setting is a completely different concept than the contextual environmental and personal factors that are in the same location in the diagram presented in the original ICF's model.^1(p18) The arrows from these contextual factors pointed upward in the original ICF (ie signifying an influence over body function, activity, and participation). In the modified ICF, they point downward from the components (signifying that their information contributes to scene setting). Scene setting is limited to a given act of participation. It is defined as the sum total of all the factors that contribute to a given act of participation for a given person in a given environment at the level of ICF codes. It includes the contributions of factors that make a given participation code inappropriate to the actual situation as in Badley's original concept of scene setting;¹⁷ and of all components, domains and codes, and interactions thereof that are relevant to that given act of participation. In general, scene setting would be recorded as a narrative that relates the different factors that enter into it. This is consistent with the purpose of scene setting that is to explain a given state of participation. Another purpose of scene setting might be to assess the severity of the obstacles to participation. That would fall into the field of clinimetrics,^12,40 a process of adding items to give one final severity score, such as the Apgar score, for instance. Theoretical and empirical research is needed to find out under what conditions this approach might be applicable to scene setting, for instance, to find what combinations of scores of extent of function/impairment and of environmental facilitators/barriers of the involved codes might appropriately reflect impact on participation. If that is feasible, scene setting might be useful in population-based studies as well as in serial studies.

Components of the Modified ICF

Body Function

This refers to the functions of the person or of parts of the body that are feasible in the context of constraints and facilitators provided by the body's structure. The only referent is the body structure in the modalities that it may assume (for instance, modalities of motion of bones about articulations, of tension and length of specific muscles, and of responsiveness of the nervous system to stimuli in phases of awakeness/sleep). Whether the function associated with such modalities is passively or actively derived is irrelevant.

Intent

This refers to a person's self-agency that leads or may lead to an act or to contemplation of an act. It is a person's will as an autonomous agent. There is no ambiguity in distinguishing intent from function or participation, as they measure different constructs. Elucidation of intent may be based upon its expression by the person in a statement, through body language, or in some other way. The person's will may be exerted spontaneously (ie without known antecedents) or, more often, as a response to influences that have been translated by the person into an autonomous or adopted decision. In this context, “will” refers to either a personal formulation of an intended act or an engagement with the environment based on habitus,⁴¹ a pattern of engagement with the environment that is based on cumulative prior experiences, is characteristic of the person, and may be automatic.

Junction between Intent and Environment

This junction is a critical step in the production of participation. The person enters the environment through her/his individual agency with an initial activity or habitus, attitudes, and goals generated by her/his intent. Interaction with the environment eventually generates the activity or habitus and extent of satisfaction that emerges as participation.

Environment

Unless otherwise qualified, environment refers to the actual physical and social environment of the person at the time of participation. It has the same domains (chapters) and codes as the original ICF, and the same qualifiers of obstacles and facilitators.

Environment is static in the ICF as well as in the DCP: there is the person, there is the environment, and they interact. However, the relation of the environment to participation is dynamic in at least two respects. First, interactions of persons with the environment meet interactions of others within the same environment. Thus, environment is the site of a dynamic confrontation between activities of the person and activities of others, and between attitudes of the person and attitudes of others. Second, a diachronic dynamic occurs after the persons engage with the environment, through their individual agency, when they encounter obstacles, facilitators, or other modifiers and respond by adapting or otherwise modifying activity and/or attitude. A similar process may occur with regard to the agencies of others who are involved with the person's intent and may adapt or otherwise modify their own activities and/or attitudes. These two features require additional qualifiers of environmental codes.

Participation

Participation is defined in the modified ICF as the outcome of the person's encounter with the physical and social environment. This outcome has two dimensions: the person's activity and her/his feelings about that encounter. The modified ICF's participation component is organized at the domain/code level in the same way as in the original ICF. The activity dimension is captured in the involved codes with assessments of the difficulties encountered, as in the original ICF, with extent to which targeted quality of activity is achieved and with satisfaction with the activity. Each of these assessments may be done by outsiders or insiders.

The person's feelings or attitudes about the encounter with the environment and its relationship with their goals, values, and meaning may be assessed along dimensions of importance, saliency,²⁶ and enfranchisement.²⁸

Enablement of Participation

Enablement of participation is not a component, but it is a major objective of studies on participation. The modified ICF facilitates this endeavor in a general way by increasing the representation of the environment in the genesis of participation. Thus, it may help groups who search for aspects of the environment that might be modified to increase enablement, as in the article cited above.³⁹ Further, it opens specific approaches based on individual and joint agencies that might advance attempts at enactment of satisfactory participation.

Individual agency refers to the person's exercise of her/his will to engage in a given activity. It includes the initial intent, the steps carried out by the person to transform this intent into an activity, and, in so doing, the initial contact with the environment. The therapist or researcher may contribute to enablement at this stage by supporting the person's will, assessing its relation to the person's capacity to achieve the objective, and contributing to strategies to engage the environment.

Joint agency refers to relevant joint activities of all stakeholders (including the person's individual agency). These stakeholders (individuals, groups, institutions) are active in chapters 3, 4, and 5 of the ICF environment component.^1(pp187-207) Efficacious joint agency implies a convergence of activities and/ or attitudes of the stakeholders. Social psychology research reveals structural aspects of joint agency. Bratman identified three features of efficacious joint agency: (1) mutual responsiveness to behavior of the other; (2) commitment to the joint activity, not necessarily for the same reasons; and (3) commitment to mutual support. Further, there has to be common knowledge among the participating agents of all these features. The crucial link among the actors is not only a cognitive link, such as mutual belief or mutual knowledge, but also a specific form of interdependence of the individual intentions of the participants.⁴² Pacherie has identified six dimensions of variation in joint action, namely, (a) number of participants, (b) equalitarian versus hierarchical relationships, (c) extent and form of division of labor among the coagents, (d) nature of interaction among participants, (e) transient versus long-term nature of the interaction and extent of opportunity to act jointly over time, and (f) regulation of joint action by complex institutions.⁴³

Finally, the physical environment is an important contributor to participation. Social studies of science have developed ethnographic methods, such as actor network theory (ANT), to trace movements and modifications of relationships within the physical and social environment in the elucidation of scientific discoveries.⁴⁴ These methods have been applied in other fields, and they might have a place in disability studies.

Codes and Qualifiers

Preservation of and Additions to ICF Codes

Preservation of ICF codes is an important feature of the proposed revision. The texts of the codes were derived after an extensive period of field testing and multidisciplinary consultations over a period of several years when adequate funding was available. The prospect of having to restart such a process is almost inconceivable. Therefore, considerable thought was given to preserving the codes. In the modified ICF, the codes of the various components remain the same (except that the intent codes are now preceded by the intent proposition).

Additional codes would be introduced exceptionally, when the original ICF is missing a code that is needed for the analysis of participation. A notable instance concerns the “testing environment” and “participation in the testing environment.” There is no reference to them in the original ICF, except for mention of a “standard or uniform environment” that may be used for testing^{1(pp15,123,214,229)} in relation to the activity qualifier of capacity. An additional environment domain, e6, would be developed to refer to the actual testing environment that was used to assess the individual's functioning.

Proposed Qualifiers

While the modified ICF is extremely parsimonious with regard to adding codes, qualifiers may be added as needed. The ICF codes are only complete with the presence of a qualifier.^1(p21) In general, the modified ICF keeps the first qualifier of the original ICF that describes the extent of the problem in each component.^1(p22) Additional qualifiers are used in the modified ICF to integrate new concepts in the classification.

The intent component has four qualifiers. The first (capacity) refers to the assessment by an outsider, such as a rehabilitation therapist, of the extent to which the person is capable of transforming her/his intent into an act; it is equivalent to the original ICF's capacity qualifier of activity-participation. The second (strength of willed activity) is the extent to which the person reports her/his intent of performing an act, from strong to weak will, as well as blocked will, unknown and not applicable. The third qualifier (origin) indicates whether the intent was “spontaneous,” activated by communication from a therapist, or activated by communication from someone else, as well as unknown or inapplicable. The fourth qualifier is expectations of environment, presented from the insider prospective.

The environment component's qualifiers include the extent of obstacles (-scale) and facilitators (+scale) to the willed activity, as in the original ICF. However, this qualifier has two versions in the modified ICF from outsider (o) and insider (i). The modified ICF has two additional qualifiers. The first one, modulation of activity, assesses the extent to which the activity that is an outcome of the encounter with the environment differs from the intended activity. The second one, modulation of expectations, assesses the extent to which the goals achieved and values satisfied at the outcome of the encounter with the environment differ from the intended ones.

The participation component retains the level of the codes of the performance qualifier of the original ICF; however, it has two versions from the perspectives of the outsider and the insider. An additional set of qualifiers assesses and compares the quality of performance in the actual environment and in a testing environment, and the satisfaction with performance from outsider and insider perspectives. In addition to these code-specific qualifiers, qualifiers of the overall participation include insider assessment of importance of issues addressed and salience of these issues²⁶ and enfranchisement.²⁸

Suggested qualifiers are summarized in Table 1.

Table 1.

Suggested list of qualifiers.

COMPONENT	DESCRIPTION OF QUALIFIER	OUTSIDER (o) OR INSIDER (i)	SCALE^{^}
Body structure	1. Extent or magnitude of impairment^*	o	Metric
Body structure	2. Nature of change in body structure^*	o	Nominal
Body function	Extent or magnitude of impairment^*	o	Metric
Intent	1. Capacity for intended activity^**	o	Metric
	2. Strength of intent	o, i	Metric
	3. Origin of intent	o, i	Nominal
	4. Expectations of environment	i	Metric
Environment	1. Code specific extent of barrier or facilitator^*	o, i	Metric (+,-)
	2. Modulation of intended activity during interaction with environment	o, i	Metric
	3. Modulation of expectations during interaction with environment	o, i	Metric
Participation	1. Code-specific Performance in actual Environment^*	o, i	Metric
	2. Code specific Quality of Performance in actual vs. testing environment^***	o, i	Metric (+,-)
	3. Code-specific Satisfaction with Performance in actual environment	o, i	Metric
	4. Overall importance of issues	o, i	Metric
	5. Overall salience of issues	o, i	Metric
	6. Overall “enfranchisement”	i	Nominal

Notes:

Scale, metric: percentage or categories of very, moderate, few, rare, and none.

As in the original ICF.

As in the original ICF but preceded by predicament of intention.

***

Difference between actual and testing environments.

Discussion

Significance of the Modified ICF

The modified ICF requires no significant change in the ICF domains and codes.

The modified ICF is free from the criticism that the ICF structure is inconsistent with the contemporary understanding that participation is the product of an interaction between person and environment since it is presented as such in the modified ICF.

It replaces the activity-participation of the original ICF with a component on intent. In the initial ICF, the transition from body function to activity/participation was rather mechanical, ie without involvement of the person as an individual agent.³¹ I believe that rehabilitation therapists and others who use the classification would be interested in the intent that expresses the self-agency of the person, per se, as well as its relation to qualifiers of capacity and willed activity.

The participation component includes all the codes of the activity/participation component of the original ICF. This is irrespective of the complexity of the action or environment: participation ranges from reading a book in bed; to activities of self-care or care of one's home; to activities engaged in one's community or natural surroundings; and to involvement with institutions, governments, or more complex social environmental settings. Further, participation always involves an interaction between the person's habitus⁴¹ and/or willed intent and the physical and/or social environment. This resolves, as far as the modified ICF is concerned, the issue of different groups of activity/participation codes.

Activity remains a key concept in the classification, but it appears in various modes: as intended activity in the intent component; as modulation of activity in the dynamic interactions of the environment component; and as one of the two outcomes in the participation component. Activity is not an entity distinct from participation; rather, it is one of two elements that combine to form participation.

The (actual) environment is a key component of the classification, without which participation becomes meaningless. It keeps all the original ICF codes and the barrier/facilitator qualifier for these codes. However, it has another dimension, as site of interaction between person and reactions of others (such as discrimination) that have a diffuse (not necessarily code specific) impact on the person. Further, it is a dynamic field that engages the person (as participant in the environment) and others (acting with their own agency or with joint agency) in serial interactions that determine the outcome. This more complex view of the environment allows a better understanding of participation.

Participation (the outcome of the interaction of person and environment) has two elements—activity and meaning—both of which are multidimensional and can be presented from the perspectives of outsiders or insiders. This complex description of participation provides a better understanding of its realities. However, by the same token, it may present the researcher or therapist with divergent goals, when performance and meaning or outsider and insider perspectives point in different directions.

The modified ICF may provide a platform to advance enablement of participation, based on interventions with individual agency in the intent component and joint agency in the environment component.

Scene setting, as defined in this article, captures the total effect of all the component code qualifier scores and interactions thereof associated with a given participatory act of a given person. It is best represented as a narrative. However, it might be developed into a quantitative instrument for population or serial studies.

Limitations and Challenges

The modified ICF, like the original ICF, is limited by its established code structure that, even at various levels of detail, sets it at a relatively low level of complexity. Further, both ICFs provide snapshots of participation at a given moment in time; a diachronic approach to participation would require serial applications of the ICF; however, this does not fully capture the trajectories of participation. The modified ICF has an additional limitation: it is a purely theoretical product. Utilization by researchers or therapists is needed to find how it works in the field and, possibly, to make some adjustments.

The modified ICF paves the way to address certain challenges of participation. When participation is identified with performance in objective social roles, the challenge posed by the person's values, goals, and civil rights is not directly addressed. However, when participation is presented from insider and outsider perspectives and from the standpoints of activities versus meanings, values, and goals, conflicts may occur. Each of the qualifiers has a reason of being. On the one hand, objective performance of an activity that allows participation in social roles of work, study, community, and home life and family is essential for integration in society. On the other hand, fulfillment of personal goals, and one's own meaning and values is essential for the enfranchisement of persons with disabilities and the exercise of their civil rights. Further research might help to develop methods to allow the coexistence of both sets of participation objectives.

The second challenge concerns the fact that participation is a bilateral (or multilateral) phenomenon. In this article and in articles on participation in general, a unilateral approach has been adopted with a focus on the participation of the person. However, participation of others with different goals in the same environment must also be considered. This issue has arisen repeatedly in the implementation of the Americans with Disabilities Act. For instance, modification of the physical environment to facilitate disabled persons' participation in work sites may be met with arguments regarding the costs that this would impose on business and opposed on that basis.

Decision, past an administrative review, is adjudicated by law courts, often in favor of business.⁴⁵ Further research might highlight the role of discrepancy in relative socioeconomic power between disabled persons and members of business or professions in enablement of participation.

Finally, the modified ICF opens up approaches to enablement of participation based on interventions with individual agency at the intent component and with agency of various stakeholders at the environment component. These approaches would be combined with fieldwork of advocates of participation of disabled persons to identify methods of developing joint agency that achieve an equitable distribution among disabled persons and other stakeholders.³⁵

These approaches based on the modified ICF might be particularly relevant to reaching an optimal mix of goals based on, for example: “What does the child want to do? How do most children behave? What activities have social, developmental and behavioral priorities?”¹⁵ They might also be relevant to studies of community receptivity to persons with disabilities⁴⁶ or of legislative reform.⁴⁷

Conclusion

The modified ICF strengthens the conceptual and structural bases of the classification without altering significantly the code structure that had been extensively tested. Its scene setting and additional constructs may support analysis of enablement of efficacious and satisfactory participation.

Dedication

Dedicated by the author's family to the memory of Dr. Rene I Jahiel, whose multiple scholarly pursuits during his lifetime included long-term work in the field of disability and the place of the disabled within society.

Author Contributions

Conceived the concepts: RIJ. Analyzed the data: RIJ. Wrote the first draft of the manuscript: RIJ. Made critical revisions: RIJ.

Footnotes

Acknowledgements

Following completion of editorial processing of this paper, but prior to the commencement of production, the publisher was informed on May 11, 2014 of the passing of Dr Rene Jahiel by his daughter Dr Abigail Jahiel. The author's family requested that the paper be published if possible. The matter was referred to the Committee on Publication Ethics (COPE) council to determine whether this could be done and whether any special procedural requirements were needed to address the inability of the author to meet the publisher's normal requirements in respect to confirmation of compliance with our ethical and legal requirements, which include disclosure of any competing interests. The COPE council recommended that another individual manage the production process in place of the author and that the competing interest statement clearly indicate that confirmation that the author had no disclosures to make could not be obtained from the author prior to his death. The editor in chief of Rehabilitation Process and Outcome, Dr Thilo Kroll, subsequently agreed to manage the production process. Dr. Jahiel's family wishes to express their gratitude to Dr. Kroll and all those who helped see this article to final publication.

References

International Classification of Function, Disability and Health. Geneva: World Health Organization; 2000.

International Classification of Impairments, Disabilities and Handicaps—A Manual of Classification Relating to the Consequences of Disease. Geneva: World Health Organization; 1980.

Badley

E.M.

The ICIDH: format, application in different settings, and distinction between disability and handicap.

Int Disabil Stud. 1987; 9: 122–128.

Bickenbach

J.E.

, Chatterji

, Badley

E.M.

, Ustun

T.B.

Models of disablement, universalism, and the international classification of impairments, disabilities and handicap.

Soc Sci Med. 1999; 48(9): 1173–1187.

Pfeiffer

The ICIDH and the need for its revision.

Disabil Soc. 1998; 13(4): 503–523.

Fougeyrollas

Documenting environmental factors for preventing the handicap creation process: Quebec contributions relating to ICIDH and social participation of people with functional differences.

Disabil Rehabil. 1995; 17(3/4): 145–153.

Nagi

S.Z.

Some conceptual issues in disability and rehabilitation. In: Sussman

, ed. Socioiogy and Rehabiiitation. Washington, DC: American Sociological Association; 1965: 100–113.

Bickenbach

J.E.

Physical Disability and Social Policy. Toronto: University of Toronto Press; 1993.

Roussel

CHI-1/CHI-2: renovation complete ou ravalement de façade.

Handicap. Revue de Sciences Humaines et Sociales. 1999; 100: 7–19.

10.

De Kleijn-deVrankrijker

M.W.

The long way from the International Classification Of Impairments, Disabilities and Handicaps (ICIDH) to the International Classification of Functioning, Disability and Health (ICF).

Disabil Rehabil. 2003; 25(11/12): 561–564.

11.

Whiteneck

, Dijkers

M.P.

Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors.

Arch Phys Med Rehabil. 2008; 90(11 suppl): S22–S35.

12.

Dijkers

Issues in the conceptualization and measurement of participation: an overview.

Arch Phys Med Rehabil. 2010; 91(9 suppl): S5–S15.

13.

Eyssen

I.C.

, Steultjiens

M.P.

, Dekker

, Terwee

C.B.

A systematic review of instruments assessing participation: challenges in defining participation.

Arch Phys Med Rehabil. 2011; 92: 983–997.

14.

Coster

, Khetani

M.A.

Measuring participation in children with disabilities: issues and challenges.

Disabil Rehabil. 2008; 30: 639–648.

15.

McConachie

, Colver

A.F.

, Forsyth

R.J.

, Jarvis

S.N.

, Parkinson

K.N.

Participation in disabled children: how should it be characterized and measured?

Disabil Rehabil. 2006; 28: 1157–1164.

16.

Magassi

, Hammel

, Heinemann

, Whiteneck

, Bogner

Participation: a comparative analysis of multiple rehabilitation stakeholders' perspectives.

J Rehabil Med. 2009; 41: 936–944.

17.

Badley

E.M.

Enhancing the conceptual clarity of the activity and participation components of the International Classification of Function, Disability and Health.

Soc Sci Med. 2008; 66(11): 2335–2345.

18.

Piškur

, Daniëls

, Jongmans

M.J.

Participation and social participation: are they distinct concepts?

Clin Rehabil. 2014; 28(3): 211–220.

19.

Raymond

, Grenier

Participation in policy discourse: new form of exclusion for seniors with disability?

Can J Aging. 2013; 32: 117–129.

20.

Ebersold

Le Temps des Servitudes, ia Famille a l'Epreuve du Handicap. Rennes: Presses Universitaires de Rennes; 2005.

21.

Lemmens

R.J.

, Timmermans

A.A.

, Jansen-Potten

Y.J.M.

, Smeets

RJEM

, Seelen

H.A.M.

Valid and reliable instruments for arm-hand assessment at ICF activity level in persons with hemiplegia: a systematic review.

BMC Neurol. 2012; 12: 21.

22.

Nelson

Occupation: form and performance.

Am J Occup Ther. 1988; 42: 633.

23.

Levasseur

, Richard

, Gauvin

, Raymond

Inventory and analysis of definitions of social participation found in the aging literature: proposed taxonomy of special activities.

Soc Sci Med. 2010; 71: 2141–2149.

24.

Brown

, Worrall

L.E.

, Davidson

, Howe

Living successfully with aphasia: a qualitative meta-analysis of the perspectives of individuals with aphasia, family members, and speech-language pathologists.

Int J Speech Lang Pathol. 2012; 14: 141–155.

25.

Heinemann

A.W.

, Tulsky

, Dijkers

Issues in participation measurements in research and clinical applications.

Arch Phys Med Rehabil. 2010; 91(9 suppl): S72–S76.

26.

Brown

Participation: the insider's perspective.

Arch Phys Med Rehabil. 2009; 90(11 suppl): S34–S37.

27.

Brown

Perspectives on outcome: what disability insiders and outsiders bring to the assessment team.

Arch Phys Med Rehabil. 2009; 90(11 suppl): S37–S40.

28.

Heinemann

A.W.

, Lai

J-S

, Magasi

Measuring participation enfranchisement.

Arch Phys Med Rehabil. 2011; 92: 564–571.

29.

McColl

M.A.

, Paterson

, Davies

, Doubt

, Law

Validity and community utility of the Canadian occupational performance measure.

Can J Occup Ther. 2000; 67: 22–30.

30.

Brown

, Dijkers

M.P.

, Gordon

W.A.

, Ashman

, Charatz

, Cheng

Participation objective, participation subjective: a measure of participation combining outsider and insider participation.

J Head Trauma Rehabil. 2004; 19: 459–481.

31.

Nordenfelt

Action theory, disability and the ICF.

Disabil Rehabil. 2003; 25: 1075–1079.

32.

Noreau

, Boschen

Intersection of participation and environmental factors: a complex interactive process.

Arch Phys Med Rehabil. 2010; 91(9 suppl): S44–S53.

33.

Whiteneck

, Meade

M.A.

, Dijkers

, Tate

D.G.

, Bushnik

, Forcheimer

M.D.

Environmental factors and their role in participation and life satisfaction after spinal cord injury.

Arch Phys Med Rehabil. 2004; 85: 1793–1803.

34.

Alma

M.A.

, Van der Mei

S.F.

, Groothoff

J.W.

, Suurmeijer

T.P.

Determinants of social participation of visually impaired older adults.

Quai Life Res. 2012; 21(1): 87–97.

35.

Kleinties

, Lund

, Swartz

Barriers to the participation of people with psychosocial disability in mental health policy development in South Africa: a qualitative study of perspectives of policy makers, professionals, religious leaders, and academics.

BMC Int Health Hum Rights. 2013; 13: 17.

36.

Randstrom

K.B.

, Asplund

, Svedlund

Impact of environmental factors on home rehabilitation—a qualitative study from the perspective of older people using the International Classification of Functioning, Disability and Health to describe facilitators and barriers.

Disabil Rehabil. 2012; 34: 779–787.

37.

Verdonscht

M.M.

, de Witte

L.P.

, Reichrath

, Bunting

W.H.

, Curfs

L.M.

Impact of environmental factors on community participation of persons with an intellectual disability: a systematic review.

J Intellect Disabil Res. 2009; 53: 54–64.

38.

Jahiel

R.I.

, Scherer

M.J.

Person-environment interaction in disability: response to comments and further steps in developing the theory.

Disabil Rehabil. 2010; 32(17): 1482–1486.

39.

Piskur

, Beurskens

, Jongman

M.J.

Parents' actions, challenges and needs while enabling participating children with a physical disability.

BMC Pediatr. 2012; 12: 177.

40.

Feinstein

A.R.

Multi-item instruments versus Virginia Apgar's principle of clinimetrics.

Arch Intern Med. 1999; 159: 125–128.

41.

Bourdieu

The Logic of Practice. Cambridge, UK: Polity; 1990.

42.

Bratmen

M.E.

Shared cooperative activity.

Philos Rev. 1992; 101: 327–341.

43.

Pacherie

The phenomenology of joint action: Self-agency vs joint-agency. In: Seemann

, ed. Joint Attention: New Developments. Cambridge MA: MIT Press; 2012: 343–389.

44.

Latour

Pandora's Hope. Essays on the Reality of Science Studies. Cambridge, MA: Harvard University Press; 1999.

45.

Colker

The Disability Pendulum. The First Decade of the Americans with Disabilities Act. New York: New York University Press; 2007.

46.

Gray

, Hollingsworth

H.H.

, Stark

, Morgan

K.A.

A subjective measure of environmental facilitators and barriers to participation for people with mobility limitations.

Disabil Rehabil. 2008; 30(6): 434–457.

47.

Meier

B.M.

, Pardries

, London

Participation in community participation through legislative reform: a study of the policy framework for community participation in the Western Cape Province of South Africa.

BMC Health Human Rights. 2012; 12: 15.

A Structural and Conceptual Modification of the International Classification of Function,Disability and Health (ICF)

Abstract

Keywords

Background

Objective

The Proposal

Structure

Graphic Representation of the Modified ICF

Components of the Modified ICF

Body Function

Intent

Junction between Intent and Environment

Environment

Participation

Enablement of Participation

Codes and Qualifiers

Preservation of and Additions to ICF Codes

Proposed Qualifiers

Discussion

Significance of the Modified ICF

Limitations and Challenges

Conclusion

Dedication

Author Contributions

Footnotes

Acknowledgements

References