Examples from studies of people with intellectual disability - IOS Press

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NeuroRehabilitation 36 (2015) 45–49 DOI:10.3233/NRE-141190 IOS Press

Review Article

How are the activity and participation aspects of the ICF used? Examples from studies of people with intellectual disability Patrik Arvidssona,b,∗ , Mats Granlundb,c and Mikael Thybergd a Centre

for Research & Development, Uppsala University/County Council of Gävleborg, Sweden and Swedish Institute for Disability Research, Jönköping University, Sweden c Department of Special Education, Oslo University, Norway d Rehabilitation Medicine, Department of Medical and Health Sciences, Link¨ oping University, Sweden b CHILD

Abstract. INTRODUCTION: Interdisciplinary differences regarding understanding the International Classification of Functioning, Disability and Health (ICF) concepts activity/participation may hinder its unifying purpose. In the ICF model, functioning (and disability) is described as a tripartite concept: 1) Body structures/functions, 2) Activities, and 3) Participation. Activities refer to an individual perspective on disability that does not tally with the basic structure of social models. OBJECTIVE: To review how activity and participation are actually used in studies of intellectual disability (ID). CONCLUSION: Based on 16 papers, four different usages of activity/participation were found. 1) Theoretical reference to tripartite ICF concept with attempts to use it. 2) Theoretical reference to tripartite ICF concept without actual use of activities. 3) “Atheoretical” approach with implicit focus on participation. 4) Theoretical reference to bipartite concept with corresponding use of terms. The highlighted studies have in common a focus on participation. However, the usage of the term “activity” differs both within and between studies. Such terminology will probably confuse interdisciplinary communication rather than facilitating it. Also, the use of an explicit underlying theory differs, from references to a tripartite to references to a bipartite concept of disability. This paper is focused on ID, but the discussed principles regarding the ICF and interdisciplinary disability theory are applicable to other diagnostic groups within rehabilitation practices. Keywords: Activity, ICF, intellectual disability, interdisciplinary rehabilitation, participation

1. Introduction Intellectual disability (ID) is related to problems with the activity/participation aspect of the International Classification of Functioning, Disability and Health (ICF) already by definition (WHO, 2001; Buntinx & Schalock, 2010). This is because reduced adaptive functioning in everyday life is used as a diagnostic criterion ∗ Address

for correspondence: Dr Patrik Arvidsson, PhD, Landstinget Gävleborg, Vuxenhabiliteringen, Folkparksvägen 5, 806 33 Gävle, Sweden. E-mail: [email protected].

in addition to intellectual impairment and occurrence before the age of 18 (WHO, 1992; AAIDD, 2010). In a rehabilitation context, interdisciplinary communication of the activity/participation aspect is important, but the basic concepts of disability differ among disciplines and practices that address rehabilitation, education and social welfare of this group (Bickenbach, Chatterji, ¨ un, 1999; Gustavsson, 2004). Badley & Ust¨ In the ICF model, functioning (and disability) is described as a tripartite concept: 1) Body structures and functions, 2) Activities, and 3) Participation. The middle part of that concept – activities – refers to an

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P. Arvidsson et al. / How are the activity and participation aspects of the ICF used?

individual perspective on disability that does not tally with the basic structure of so-called social models, which emphasize that all human actions are situated in a context (Bickenbach et al., 1999; Gustavsson, 2004; Arvidsson, Thyberg, Thyberg & Granlund, 2014). In line with social models that just make a bipartite distinction between a bodily perspective and a social perspective, a precursor of rehabilitation medicine suggested that an individual perspective should be substituted with a social perspective as early as 1912 (Thyberg, Nelson & Thyberg, 2010). Also, the ICF distinction between activity and participation is problematic in a philosophical perspective that refers to action theory (Nordenfelt, 2003). In such a philosophical perspective, a tripartite concept does not seem to make sense and might be due to a confusion of the conceptual issue of defining disability and methodological issues related to the need to specify environmental aspects with respect to estimations of ability. Because disability and rehabilitation are interdisciplinary issues there is a strong need for a unifying theory with a common language (Bickenbach et al., 1999). Thus, differences regarding the understanding of the activity/participation aspect are problematic both with respect to interdisciplinary communication in different practices and with respect to interdisciplinary formation of knowledge. Because activity and participation aspects are classified in a single list, researchers have to pay attention to whether a study takes place in the actual environments of the persons or in a so-called standard environment (WHO, 2001; Arvidsson et al., 2014). In the literature, some studies refer to the ICF tripartite concept without actually using or discussing that structure and some use a somewhat confusing mix of activity and participation concepts. Analyzing studies focusing on activity/participation in persons with ID can contribute to the understanding of how activity and participation aspects are used in research at a more general level. The aim of this brief review is to highlight how activity and participation aspects are actually used with examples from empirical studies of people with intellectual disability.

2. The review The search was for empirical studies of people with ID addressing activity and participation according to the ICF and the databases used were: Ovid MEDLINE, EiRA LWW Journals, PsycINFO, AMED and

ERIC. The search terms and combinations were: (activity OR participation) AND (“international classification of functioning, disability and health” and/or ICF) AND (“intellectual disability/disabilities” OR “developmental disability/disabilities” OR “learning disability/disabilities” OR “mental retardation”). The search terms had to be in the abstract of the article. Initially, 38 articles were found. After excluding reviews, theoretical studies and conceptual linkages of instruments, 16 articles remained of which 8 are described in this paper. The described studies represent a sample that was retrieved. There was no intention to make a quantitative or fully representative description. Thus, some interesting examples may be missing. To our knowledge, there are at least four quite different usages.

3. Usage of activity and participation in empirical studies 3.1. Theoretical reference to tripartite ICF concept with attempts to use it There are studies with an explicit reference to the tripartite ICF concept of disability that also try to use a distinction between activities and participation. However, it is questionable if the ICF concept of activities is actually used, although the term “activities” is used. For example, in a study by Van Naarden Braun, YearginAllsopp and Lollar (2006), the term “activities” is used in two different ways but none of these usages seems to tally with the ICF concept of activities. Firstly, it is used in expressions such as “participation in leisure activities”. Here the term “activities” just seems to denote a list of things that people may do, i.e., the common activity/participation list of the ICF classification (Arvidsson et al., 2014). Secondly, it is used to denote “activity limitations” regarding e.g. fixing meals and talking on the phone, a usage that may seem to tally with the tripartite concept of the ICF. However, an important condition of focusing on the ICF concept of activity is a so-called standard environment. In the ICF, the environmental aspect encompasses products and technology, physical environment, support and relationships, attitudes, and services, systems and policies. A standard environment is supposed to have the same facilitating impact regarding all persons in all countries. Van Naarden Braun et al. (2006) do not make any assumptions about a standard environment. Instead, the measured variables represent reported performance in the actual environments of


the studied persons. Reasonably, this corresponds to the ICF concept of participation, although the mentioned activity/participation categories may of course be perceived to represent quite basic actions (Nordenfelt, 2003). Although certain chapters of the ICF activities/participation list may be used to study activities, the mere usage of certain chapters does not mean a focus on activities if there is no standard environment (WHO, 2001). 3.2. Theoretical reference to tripartite ICF concept without actual use of activities Another way of using the ICF is to introduce the tripartite ICF model as the theoretical background of a study, but to use only the participation concept in the empirical part (Petrovic, Markovic & Peric, 2011; Faulks et al., 2013). For example, Faulks et al. (2013) give an explicit theoretical reference to the ICF distinction between activity and participation, but then shift to describing a wide range of participation aspects, from acquiring skills (Chapter 1) to community, social and civic life (Chapter 9). There is no further comment about activities except that the term “activities” is used occasionally, as if it were interchangeable with participation. Probably this mix of terms is a mistake because in the rest of the paper the focus on participation in the patient’s current environment is clear; there is nothing about so-called standard environments that would be necessary in order to address the individual perspective of the ICF activity concept. Actually, an interesting part of these studies is that they also address the impact of environmental factors on the ability to participate in routine dental treatment. This type of studies also uses expressions such as participation in “activities” (Rosenberg, Ratzon, Jarus & Bart, 2012). This usage seems to refer to the common activities/participation classification list rather than the ICF concept of activity, a usage that is discussed above in relation to the paper by Van Naarden Braun et al. (2006). 3.3. “Atheoretical” approach with implicit focus on participation A third way is to use the ICF classification part without any explicit reference to disability theory or conceptual models. Such an approach is represented by Maeda et al. (2005) who do not mention the tripartite ICF model, make no theoretical distinction between the activity and participation concepts, but relate to the

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structure of the activity/participation classification list as a whole in terms of “codes”. Because the authors relate such codes to their patients’ actual environments they seem to mean that the codes represent the ICF participation concept. A statement that daily “activities” are included is probably not meant to represent the ICF concept of activities but simply certain codes of the common activity/participation list. A similar approach is represented by Hwang et al. (2013) who refer to “the ICF” and participation without mentioning the ICF conceptual model or the ICF concept of activities. Similar to Maeda et al. (2005) they seem to use the word “activities” simply to denote a list of things that one may participate in.

3.4. Theoretical reference to bipartite concept with corresponding use of terms Though trying to use the ICF as far as possible, the studies by Arvidsson et al. (2012, 2014) go further in recognizing action theory as well as the basic structure of social models of disability. In terms of the ICF, such models just make a distinction between impairments in a bodily perspective and participation restrictions in a social perspective. In contrast to the individual perspective of the tripartite ICF model, the studies are explicit about using the term “activities” simply to denote the whole activities/participation list of things that people may do. This is a pure activity perspective in contrast to the individual perspective of the ICF model. In terms of occupational therapy theory, this usage refers to the more abstract meaning of “activity as form” in contrast to “activity as action”. In the studies by Arvidsson et al. (2012, 2014), participation is used to denote actually performed “activities” in actual situations, including more or less standardized environments. To assess participation, a simple self-reported measure of frequency is used. The studies also explore the possibility to combine such a measure with a measure of the perceived importance of different “activities” in order to get measures of “important participation” and “important participation restrictions”. Arvidsson et al. (2012, 2014) also use a measure of “perceived ability”. The latter is regarded as a more general concept than participation because it may also refer to situations not yet experienced or observed. For example, a person who does not have a remunerative employment may perceive that he has the ability given favorable environmental situations not yet experienced.

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4. Ability as a general concept in relation to activity and participation Capacity is one of the so-called qualifiers of activities, with performance being the other. An interpretation that the discussed studies actually use the participation aspect and not the ICF concept of activities is supported by the fact that they do not use the ICF concept of capacity. Instead, the term ability is used (Maeda et al., 2005; Petrovic et al., 2011; Faulks et al., 2013). In the ICF, ability is only mentioned as an unspecified term when the term capacity is introduced in order to explain the ability to perform an activity in a socalled standard environment. Ability may be regarded as a more general concept than participation because it may refer to either actually performed “activities” in actual situations (participation) or the ability to perform “activities” given environmental situations not yet experienced or observed. The actual performance of “activities” (participation) is a way to know the ability of a person. In addition, rehabilitation professionals may estimate a person’s ability to perform a certain “activity” on the basis of available information about body functions, actually performed “activities” and environmental conditions. For example, Maeda et al. (2005) support that a person with ID may be able to participate in dental treatment without sedation or general anesthesia if there is just a mild intellectual disability in terms of IQ and/or if the person is reported to have participated in certain other “activities” such as watching, dressing and eating. Also, the study by Maeda support that persons with ID may have the ability to participate in such dental treatment if there is support and positive attitudes in the environment. The findings regarding environmental factors highlight the importance of specifying different aspects of the environmental situation regarding estimations of ability (WHO, 2001; Nordenfelt, 2003).

(Bickenbach et al., 1999; WHO, 2001). However, it seems that a mixed usage of the “activity” term confuses rather than facilitates interdisciplinary communication. This paper is focused on ID, but the discussed principles regarding the ICF and interdisciplinary disability theory are of course applicable to other diagnostic groups within neurorehabilitation practices. The discussed variety of usages indicates a need for further analyses of the underlying theories of bipartite and tripartite concepts of disability (Bickenbach et al., 1999; Nordenfelt, 2003). Why are there both bipartite and tripartite concepts? What is the history and nature of the conceptual problem?

6. Future research A challenge for future rehabilitation research is to address interdisciplinary disability theory as a complement to the well-developed awareness about clinical and methodological issues. Within the field of neurorehabilitation, traditional bio-medically oriented research on, for example, the pathophysiological mechanisms of different impairments may of course rely mainly on methodological considerations. However, rehabilitation research that integrates the fields of social sciences (Stucki & Grimby, 2007), such as studies on participation and enabling/disabling mechanisms, will probably need an increased awareness about disability theory in an interdisciplinary perspective (Gustavsson, 2004). Integrating different scientific perspectives with respect to the formation of knowledge about disability and rehabilitation is an important aim of the ICF (Bickenbach et al., 1999; WHO, 2001). To clarify the conceptual issue highlighted in this paper is a necessary step within that ICF project.

Declaration of interest 5. Conclusion and clinical implications The discussed studies have in common a focus on participation. However, the usage of the term “activity” differs both within and between studies. Also, the use of an explicit underlying theory differs, from references to a tripartite concept of disability to references to a bipartite concept. It cannot be excluded that a theoretical ambiguity contributes to the mixed usages of the term “activity”. One aim of the ICF is to provide a common language for interdisciplinary teamwork

All authors affirm that they have no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

References American Association on Intellectual and Developmental Disabilities (AAIDD). (2010). Intellectual Disability: Definition, Classification, and Systems of Supports (11th Edition). Washington, DC: American Association on Intellectual and Developmental Disabilities.

P. Arvidsson et al. / How are the activity and participation aspects of the ICF used? Arvidsson, P., Granlund, M., Thyberg, I., & Thyberg, M. (2012). International Classification of Functioning, Disability and Health categories explored for self-rated participation in Swedish adolescents and adults with a mild Intellectual disability. Journal of Rehabilitation Medicine, 7, 562-569. Arvidsson, P., Granlund., M, Thyberg, I., & Thyberg M. (2014). Important aspects of participation and participation restrictions in people with a mild intellectual disability. Disability and Rehabilitation, 36, 1264-1272. ¨ un, T. (1999). Models Bickenbach, J., Chatterji, S., Badley, E., & Ust¨ of disablement, universalism and the international classification of impairments, disabilities and handicaps. Social Science & Medicine, 48, 1173-1187. Buntinx, W. E., & Schalock, R. L. (2010). Models of disability, quality of life, and individualized supports: Implications for professional practice in intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 7, 283-294. Faulks, D., Norderyd, J., Molina, G., Macgiolla Phadraig, C., Scagnet, G., Eschevins, C., & Hennequin, M. (2013). Using the International Classification of Functioning, Disability and Health (ICF) to Describe Children Referred to Special Care or Paediatric Dental Services. Plos ONE, 8, 1-12. Gustavsson, A. (2004). The role of theory in disability research – springboard or strait-jacket? Scandinavian Journal of Disability Research, 6, 55-70. Hwang, A., Liou, T., Bedell, G., Kang, L., Chen, W., Yen, C., &... Liao, H. (2013). Psychometric properties of the child and adolescent scale of participation – traditional Chinese version. International Journal of Rehabilitation Research , 36, 211-220. Maeda, S., Kita, F., Miyawaki, T., Takeuchi, K., Ishida, R., Egusa, M., & Shimada, M. (2005). Assessment of patients with intellectual disability using the International Classification of Functioning,

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Disability and Health to evaluate dental treatment tolerability. Journal of Intellectual Disability Research, 49, 253-259. Nordenfelt, L. (2003). Action theory, disability and ICF. Disability and Rehabilitation, 25, 1075-1079. Petrovic, B., Markovic, D., & Peric, T. (2011). Evaluating the population with intellectual disability unable to comply with routine dental treatment using the International Classification of Functioning, Disability and Health. Disability & Rehabilitation, 33, 1746-1754. Rosenberg, L. L., Ratzon, N. Z., Jarus, T. T., & Bart, O. O. (2012). Perceived environmental restrictions for the participation of children with mild developmental disabilities. Child: Care, Health & Development, 38, 836-843. Stucki, G., & Grimby, G. (2007). Organizing human functioning and rehabilitation research into distinct scientific fields. Part 1: Developing a comprehensive structure from cell to society. Journal of Rehabilitation Medicine, 39, 293-298. Thyberg, M., Nelson, M. C., & Thyberg, I. (2010). A definition of disability emphasizing the interaction between individual and social aspects that existed among Scandinavian precursors of rehabilitation medicine as early as 1912. Journal of Rehabilitation Medicine, 42, 182-183. Van Naarden Braun, K., Yeargin-Allsopp, M., & Lollar, D. (2006). Factors Associated with Leisure Activity among Young Adults with Developmental Disabilities. Research in Developmental Disabilities: A Multidisciplinary Journal, 27, 567-583. WHO (World Health Organization). (1992). The ICD-10 classification of mental and behavioural disorders: Clinical descriptions and diagnostic guidelines. Geneva: World Health Organization. WHO (World Health Organization). (2001). International Classification of Functioning, Disability and Health (ICF). Geneva: World Health Organization.