Abstract

Participation is a central aspect of human functioning and a key focus of research and practice in the intellectual disability field. However, there is not an accepted definition of participation that guides research and practice. To inform the development of a definition, a scoping review of the intellectual disability literature from 2001−2015 was conducted. Findings suggest that existing research rarely uses definitions of participation, but does examine participation across multiple domains and addresses issues of access and inclusion. Less focus was placed on individual aspects of participation such as meaning, responsibility, and choice. Based on the findings, implications for future research and practice are provided.

Participating in a variety of activities and experiences across life domains is central to the lives of all people, including people with intellectual disability. Participation has been linked with positive health and well-being (Law, 2002), and enhancing participation across the lifespan is a key focus of research and practice in the intellectual disability field (Hewitt, Heller, & Butterworth, 2015). The American Association on Intellectual and Developmental Disabilities (AAIDD) included participation as one of five domains that influence human functioning in the 11th edition of its Intellectual Disability: Definition, Classification, and Systems of Supports manual (Schalock et al., 2010). The inclusion of participation and description of key domains within which people participate (i.e., leisure, home living, social roles, education, spiritual, and cultural) in the manual emphasizes the need to systematically consider factors related to enhancing participation when planning for systems of supports to enhance outcomes (Schalock et al., 2010) and builds on the introduction of participation in the early 2000s in the World Health Organization's (WHO) International Classification of Functioning, Disability, and Health (ICF).

Participation in the International Classification of Functioning, Disability, and Health Framework

In 2001, the WHO published the ICF, introducing a classification system based on a social-ecological model of disability. The ICF situated disability within the broader framework of typical human functioning, acknowledging that “an individual's functioning in a specific domain is an interaction or complex relationship between the health condition and contextual factors (i.e., environmental and personal factors)” (WHO, 2001, p. 17). The ICF further defined functioning as an umbrella term for all life activities of a person that encompasses body structures (anatomical parts of the body) and functions (physiological and psychological functions of body systems), personal activities (the execution of a task or action by an individual), and participation (involvement in a life situation). Disability involves impairments to body structures or functions that result in activity limitations and participation restrictions. Participation, therefore, is a central part of the ICF framework of individual functioning.

In practice, then, the ICF considers functioning at three levels: (a) impairment in body functions and structures, (b) activity limitations, and (c) participation restrictions. At the impairment level, the person's body system and structural functioning is considered (e.g., the presence of a central nervous system impairment that results in cognitive or intellectual impairment). Activity limitation refers to the mismatch between the environmental context and the individual's body structures and functions (e.g., unable to use public transportation because it is not accessible, cognitively or physically). Participation restriction considers the social influences on engagement in activities or life situations (e.g., the community is not accessible, which is influenced by social factors, including attitudes or policies).

The ICF highlighted the central role of activity and participation in influencing functioning and in understanding disability. It also brought increased definitional and conceptual focus to the right of people with disabilities to participate in their communities and the need to address social barriers to participation. The social-ecological model of understanding disability, in essence, considers how a person's capacities, abilities, and competencies interact with the demands of inclusive environments to create a need for supports that enable that person to function successfully (Thompson et al., 2009). When environmental barriers restrict participation, human functioning can be encouraged by providing supports to enhance personal capacity or reduce the demands of the environment. One outcome of the identification of such supports will be improving involvement in activities and enhancing participation.

However, researchers have noted a number of issues with the definition of participation included in the ICF framework that make conceptualization and measurement of participation difficult (Dijkers, 2010; Hammel et al., 2008; Heinnaman et al., 2010). For example, Dijkers (2010) suggested that in the ICF framework (1) participation is not adequately defined to enable robust measurement and practice, (2) the current definition does not reflect the individual nature of participation in a social context, and (3) participation is not adequately differentiated from the related construct of activity. In the following sections, we elaborate on each of these issues.

Defining Participation

The ICF defined participation as “involvement in a life situation” (WHO, 2001, p. 8) and the closely related construct of activity as “the execution of a task or action by an individual” (p. 8). The ICF further differentiates these constructs by stating that activity limitations refer to individual functioning and that participation restrictions are experienced in a social context. However, as noted by multiple researchers, this definition does not easily lead to the operationalization and measurement of the construct and to the development of participation enhancement strategies. To address the limitations of the ICF definition, researchers have offered new definitions or frameworks for understanding participation and the related construct of activity to attempt to provide clarity for research and assessment. Each definition adds an important component to the construct, and researchers need to consider these definitions while developing a new framework.

Whiteneck and Dijkers (2009) highlighted the social aspect of participation by proposing activity is performance at the individual level and participation is performance at the societal level. These authors further suggest that the function of participation is to fulfill social roles. Similarly, Dalemans, De Witte, Wade, & Van den Heuvel (2008) defined participation as “the performance of people in actual activities in social life domains through interaction with others in the context in which they live” (p. 1073). Coster and Khetani (2008) focused on defining life situation, which they defined as a “set of organized sequences of activities directed toward a personally or socially meaningful goal” (p. 643). They then defined participation as “the extent of engagement in the full range of activities that accomplish the larger goal” (p. 643). Finally, Perenboom and Chorus (2003) introduced issues of autonomy into their definition, defining participation as “the involvement of life situations, which includes being autonomous to some extent or being able to control your own life, even if one is not actually doing things themselves” (p. 578).

The Individual Nature of Participation in Context

Still other researchers have defined participation based on its meaning to the individual. For example, Mallinson and Hammel (2010) defined participation as “a pattern of life that is personally relevant, acceptable, meaningful, and supported in society” (p. S30). Magasi, Hammel, Heinemann, Whiteneck, & Bogner (2009) emphasized that participation is characterized by diversity, individuality, and environmental influences. Hammel and colleagues (2008) conducted focus groups with people with disabilities, including people with intellectual disability, to gather personal perspectives on what participation meant to them. The focus group participants identified themes related to participation relevant to their lives, including meaningful engagement, responsibility, having an impact/supporting others, inclusion/social connection, access and opportunity, and choice and control.

The current measurement focus in the ICF framework (and in much research conducted in the field) is on measuring “performance,” which describes what a person does, and “capacity,” which describes a person's ability to participate (WHO, 2001). Said another way, these objective indicators measure “how much” and “how well” a person participates. Although this may be an important element of understanding the activities in which a person is engaged, measuring participation in the “how well” and “how much” mode serves only to further conflate the constructs of participation and activity. There is a need for measures to address the individualized nature of participation, described previously. For example, some people may prefer to engage in multiple activities, others may prefer to focus on deep engagement in one activity. Understanding these preferences and their associations with decisions about participation are critical.

Additionally, contextual influences on participation have been highlighted as an area for measurement (Dunn, 2007; Hammel et al., 2008; Law et al., 1996). Tools that assess the interaction of person and environmental factors that impact access to environments, activities, and participation have not been created for research to date. As such there is a need to conceptualize and clearly define participation to enable people with disabilities and the international community to have shared terminology and frameworks for identifying and implementing policies and practices that can promote participation in various life domains. Life domains include leisure, home living, social roles, education, spiritual, and cultural (Schalock et al., 2010). This is particularly important given the use of the participation construct in the ICF framework, as well as its adoption in the AAIDD Intellectual Disability: Definition, Classification, and Systems of Supports manual (Schalock et al., 2010)

Differentiating Participation From Activity

As exemplified in the definitions reviewed in the previous sections, defining participation often requires defining related constructs, particularly the construct of activity in the ICF framework. And, difficulties are often encountered in differentiating participation from activity as well as other closely related constructs, such as quality of life and community integration (Heinnaman et al., 2010). The ICF's definition of activity as the “execution of a task or action by an individual” (WHO, 2001, p. 11), is meant to enable self-advocates, families, practitioners, and researchers to identify whether an individual executes a task or action (i.e., observable, measurable behavior). However, the alignment of this understanding with defining and differentiating participation from engagement in an activity is less clear. In many circumstances, researchers may measure participation by quantifying engagement in activities (e.g., the number of social activities or recreation/leisure activities in which a person engages). The degree to which participation can be measured, consistent with the definitions in the previous section, that include elements not only related to activity engagement but also social influences and life situations, has not been adequately addressed, nor has what is meant by “life situations.”

Purpose of This Study

Given (a) the acknowledged role of participation in human functioning, (b) the growing emphasis on enhancing participation as a valued outcome of supports and services for people with intellectual disability, and (c) the lack of consensus regarding the definition and measurement of participation emerging from the social-ecological model of disability, there is a need for systematic efforts to develop definitional and measurement frameworks for understanding and enhancing participation. Toward that end, the purpose of this article, is to synthesize existing literature in the intellectual disability field that uses the construct of participation. It is hoped that the results of this study can inform future efforts to further define the participation construct and enable research, measurement, and the creation of supports for participation.

Method

We engaged in a scoping review of the literature on participation in the intellectual disability field to explore the definitions adopted in the literature, the degree to which the domains of participation identified in the AAIDD Intellectual Disability: Definition, Classification, and Systems of Supports manual (Schalock et al., 2010) were represented in the current research base, and the degree to which themes related to the individualized nature of participation were included in research. To define themes related to the individualized nature of participation represented in the research, we adopted a framework that emerged from research from the perspective of people with disabilities on participation (Hammel et al., 2008). This framework was particularly relevant as it represents how people with disabilities, themselves, conceptualize participation. The research questions that guided the scoping review included

  • 1.

    What are the characteristics of studies that focus on participation in the intellectual disability field?

  • 2.

    How has participation been defined in research in the intellectual disability field?

  • 3.

    To what degree are the domains of participation from AAIDD's Intellectual Disability: Definition, Classification, and Systems of Supports manual (Schalock et al., 2010; leisure, home living, work, education, spiritual/cultural) represented in the literature?

  • 4.

    To what degree are themes identified as important to participation by people with intellectual disability (meaningful engagement, choice and control, personal and societal responsibility, access and opportunity, and inclusion; Hammel et al., 2008) represented in the literature?

Scoping reviews are a rigorous, systematic method to synthesize information and eliminate bias, particularly when a concept or construct is not well defined and researchers want a broad understanding of the nature of that concept or construct (Levac, Colquhoun, & O'Brien, 2010). In contrast to systematic reviews, scoping reviews do not necessarily seek to understand the quality of the studies reviewed. Rather, the purpose is to understand how a concept or construct is understood across a broad range of research.

Search Strategy

To identify articles for our scoping review, searches of Medline, PsycINFO, and ERIC databases were conducted. We targeted articles published from 2001 (the year the ICF was published) to 2015 with abstracts containing the word participation and intellectual disability or mental retardation. The number of articles on participation for children, youth, and adults with intellectual disability was extensive and we chose to narrow the scope of our review to adults, although future research should address issues of participation in children with intellectual disability.

Our initial search resulted in 553 articles. We used a systematic process to identify articles that met our inclusion criteria. In the first step, the lead author reviewed the abstracts of articles in the initial search and applied the inclusion criteria, which were that the article had to (a) include adult participants with intellectual disability (if adolescent participants were also included, the article was retained in the review), (b) report the systematic collection of data on participation of people with intellectual disability, (c) be peer reviewed, and (d) be in English. Eighty-eight articles were identified that met these criteria.

Coding Procedure

The 88 articles that met criteria were then systematically coded, using a coding sheet developed for the purposes of this study. To answer Research Question 1, we analyzed each article based on (1) methods, (2) purpose, and (3) participant characteristics (i.e., number, diagnosis, and age range). For methods, we coded based on whether qualitative (interview) or quantitative (observational, survey, or assessment) data was collected. When a survey or assessment tool was used, we recorded the name of the tool. We coded the purpose of the study based on whether the study was an (a) intervention study to enhance participation or a (b) descriptive analysis of participation. For Research Question 2, we coded whether an explicit definition of participation was provided (yes/no). When a definition was provided it was recorded.

To address Research Question 3, we classified articles based on the domains of participation identified in the AAIDD Intellectual Disability: Definition, Classification, and Systems of Supports manual (Schalock et al., 2010), including (1) Leisure, (2) Home Living, (3) Social Roles, (4) Education, (5) Spiritual, (6) Cultural, and (7) Other. These domains of participation provide overarching categories that are generally accepted when conceptualizing participation (Schalock et al., 2010; WHO, 2001). Table 1 provides the definitions used to code articles into the different domains. Articles could be coded as addressing multiple domains. Last, to address Research Question 4, we coded articles based on the presence of the themes that emerged from research conducted by Hammel et al. (2008) with people with disabilities, including meaningful engagement, choice and control, personal and societal responsibility, access and opportunity, and inclusion. Definitions for each theme are provided in Table 1.

Table 1

Coding Definitions for Domains and Themes

Coding Definitions for Domains and Themes
Coding Definitions for Domains and Themes

The coding sheet and definitions were developed iteratively. The research team developed the initial coding sheet and definitions, then the first two authors coded 10% of articles, reviewed their coding results, and adjusted code definitions. This iterative process was repeated until coding was 80% reliable. After the final coding sheet was developed, the first two authors divided the remaining articles and coded them separately, except for articles jointly coded for interrater reliability.

Interrater Reliability

The first two authors jointly coded a random sample of 20% of the articles to ensure reliability in coding. Agreement or disagreement was scored for each item on the coding sheet. Percent agreement was calculated for each item by summing the number of agreements and dividing by the total number of articles. Cohen's κ was also calculated. When there was disagreement, the authors discussed the article in question and came to a consensus on the coding. If needed, the authors recoded their other articles based on the consensus agreement of the code. The authors ended with 83% agreement on all codes. There was moderate to substantial agreement between the two raters (Cohen's κ = .66).

Results

Characteristics of Studies

Using the inclusion criteria identified previously, 88 articles were identified that met the parameters of our scoping review. All years (2001–2015) were represented in our study, however, over 68% of studies included in our review occurred in the 6-year span between 2009 and 2015. Table 2 displays the number and percentage of articles that had a descriptive focus and articles that used quantitative methods (Research Question 1). Thirty-one (35%) of the articles used qualitative and 57 (65%) used quantitative methods. Qualitative studies used interviews with the primary purpose of understanding the perspective of adults with intellectual disability on participation in a broad range of activities, including serving on governmental advisory boards (Finlayson et al., 2009), voting (Kjellberg & Hemmingsson, 2013), choice making in the home environment (Beadle-Brown, Mansell, Whelton, Hutchinson, & Skidmore, 2006), and self-advocacy related to social participation (Bjornsdottir & Johannesson, 2009). Similarly, articles using quantitative methods covered participation across many different activities, such as exercise (Temple & Stanish, 2011) and employment (Butterworth, Hiersteiner, Engler, Bershadsky, & Bradley, 2015; Lysaght et al., 2014).

Table 2

Characteristics of Studies by Domain and Theme

Characteristics of Studies by Domain and Theme
Characteristics of Studies by Domain and Theme
a

Percentages were calculated as Number of Articles Coded/Total Number of Articles. More than one Domain or Theme could be coded, therefore percentages may be greater than 100%.

b

Percentages were calculated as Number of Articles Coded as Descriptive/Total number of articles in the specific domain or themes.

c

Percentages were calculated as Number of Articles Coded as Quantitative/Total number of articles in the specific domain or themes.

The primary aim of 73 (83%) of articles was descriptive. Fewer articles (n = 15; 24%) intervened to impact participation. Descriptive articles ranged from large national studies examining participation in work (Butterworth et al., 2015; Chiang, Cheung, Li, & Tsai, 2013; Holwerda, van der Klink, de Boer, Groothoff, & Brouwer, 2013) to individual experiences with work (Cramm, Finkenflügel, Kuijsten, & van Exel, 2009; Lysaght, Petner-Arrey, Cobigo, & Ouellette-Kuntz, 2009). A number of studies also investigated patterns of participation in leisure activities (Buttimer & Tierney, 2005; Duvdevany & Arar, 2004), sports (Glidden, Bamberger, Draheim, & Kersh, 2011), and exercise (Brooker et al., 2015). The majority of intervention studies focused on adolescents, although all also included some participants over age 18, which met our inclusion criteria for the review. Examples included interventions to promote participation in individualized education program meetings (Allen, Smith, Test, Flowers, & Wood, 2001; Kelley, Bartholomew, & Test, 2011) and social participation through technology (Cihak, Wright, McMahon, Smith, & Kraiss, 2015). Examples of intervention studies for older adults included a goal planning intervention to promote increased participation at home (Mirza & Hammel, 2009) and a training program to promote later-life planning in older adults (Lifshitz, 2002).

The number of participants included in studies ranged from 1 to over 1,200. All articles included adults with intellectual disability, however many also included participants with other closely related developmental disabilities. In addition to including participants with intellectual disability, 11 articles focused on adults with autism, seven on adults with Down syndrome, four on adults with cerebral palsy, and seven on other conditions (e.g., William's syndrome, severe disability, epilepsy, etc.). Sixty-five articles studied adult ages 21 to 65; four focused older adult participants (aged 65 or older), and 13 covered both age groups. Additionally, 22 of the articles also included adolescents.

Definition of Participation

Concerning Research Question 2, only six (7%) of the articles provided or cited an explicit definition of participation. Of these, three used the ICF definition of “involvement in a life situation.” Samuel, Lacey, Giertz, Hobden, and LeRoy (2013) and Dussejee, Rijken, Cardol, Curfs, & Groenewegen (2011) used Dalemans and colleague's (2008) definition, “the performance of people in actual activities in social life domains through interaction with others in the context in which they live” (p. 1073). Finally, Wennberg and Kjellberg (2015), whose study was specific to assistive devices, defined participation as “having opportunities to influence, have control and make decisions in everyday life related to the use of cognitive assistive devices” (p. 169).

Similarly, there was no consistent tool used to measure participation. Most studies measured participation with questionnaires or surveys that served multiple purposes, including the National Longitudinal Transition Study-2 (e.g., Chiang et al., 2013; Grigal, Hart, & Migliore, 2011), the Essential Data Elements survey (Blick, Saad, Goreczny, Roman, & Sorensen, 2015), and the National Core Indicators (Butterworth, 2015; Hsieh, Heller, Bershadsky, & Taub, 2015). Examples of validated measures included the TRAIL Leisure Assessment Battery (Buttimer & Tierney, 2005), the Index of Participation in Daily Life (Felce, Perry, & Kerr, 2011), the Index of Community Integration (Felce et al., 2011), and the Canadian Occupational Performance Measure (COPM; Mirza & Hammel, 2009).

Domains of Participation

Table 2 displays the number and percentage of articles that addressed the domains of participation and themes related to the individualized nature of participation (Research Questions 3 and 4). All 88 studies addressed at least one domain of participation and researchers most frequently addressed leisure participation (n = 47; 51%). Leisure was generally studied as a broad construct related to inclusion in leisure activities (e.g., Duvdevany & Arar, 2004). The frequency of other domains were (a) work participation (n = 35; 38%), (b) home living (n = 25; 27%), education (n = 19; 21%) and other (n = 19; 21%). The least frequently investigated participation domain was spiritual/cultural (n = 7; 8%). Articles addressing work generally investigated trends in employment (Butterworth et al., 2015), barriers to employment (Holwerda, Klink, de Boer, Groothoff, & Brouwer, 2013, or person/caregiver perspectives on employment (Migliore, Grossi, Mank, & Rogan, 2008). Home living tended to focus on supports and barriers for participation related to residential support services (Bigby et al., 2014). The domain of education was generally studied either as a desired goal for adults with intellectual disability (Carr, 2008; Grigal et al., 2011; Gray et al., 2014; Iriarte, O'Brien, McConkey, Wolfe, & O'Doherty, 2014) or with respect to autonomy and self-determination in transition (Kelley et al., 2011). Similar to education, spiritual/cultural was generally studied alongside other domains when considering important aspects of participation and inclusion (Dos Santos, Groth, & Machado, 2009; Gray et al., 2014).

Nature of Participation

Considering themes related to the individualized nature of participation identified by Hammel et al. (2008), the access and opportunity theme was represented in 78% of reviewed articles and inclusion was represented in 53%. Access and inclusion were frequently coded together. Articles addressing access and inclusion tended to examine how participation was influenced by various factors, including support services (Beadle-Brown et al., 2006; Temple & Walkley, 2007), community resources (Samuel et al., 2013), and personal attributes (Carr, 2008; Chiang et al., 2013). In contrast, meaningful engagement was addressed in 40% of articles, choice in 25%, and responsibility in 9%. Meaningful engagement themes included asking participants about their interests (e.g., Iriarte et al., 2014; Mirza & Hammel, 2009) and motivations (Glidden et al., 2011) for participation. Choice was generally measured through tools specifically measuring the amount of choices made in daily life (e.g., Dos Santos et al., 2009; Hsieh et al., 2015) or was reflected as part of an intervention to increase advocacy skills related to personal choice (e.g., Allen et al., 2001). Finally, personal and societal responsibility was generally studied in the context of physical activity (e.g., Temple & Walkley, 2003), post-secondary education or employment (e.g., Grigal et al, 2011), and civic activities (e.g., Kjellberg & Hemmingsson, 2013).

Discussion

Since the ICF was published in 2001, research has increasingly focused on participation as a valued outcome for people with disability, and the importance of participation in the intellectual disability field has been suggested by its inclusion as a domain of human functioning in AAIDD's Intellectual Disability: Definition, Classification, and Systems of Supports manual (Schalock et al., 2010). To date, however, there is a lack of consensus on a definition or measurement framework for participation. The purpose of the literature synthesis described in the previous sections was to systematically review the existing literature on participation in the intellectual disability field and to identify what definitional and assessment frames were being used. In the following sections we will discuss implications of the scoping review, followed by recommendations for a definitional framework for participation aligned with definitional and theoretical models widely used in the field of intellectual disability.

Characteristics of the Literature Base

Although researchers have examined participation in multiple domains with people with intellectual disability, the majority of studies included in our review occurred from 2009 onward. This may have been influenced by the publication of AAIDD's Intellectual Disability: Definition, Classification, and Systems of Supports manual in 2010. The majority of the research was descriptive in nature. Fifteen percent of reviewed studies were intervention studies and of those, only four studies collected quantitative data. The remaining studies were descriptive and most of them collected data through semistructured interviews or observations rather than validated assessments. Beyond citing published participation measures, there was generally a lack of detailed description of observational tools used to categorize participation or reporting of interrater-reliability in measuring participation using observational tools. This suggests the need for further research on systematic methods to identify and measure participation for people with intellectual disability across domains.

Definitions of Participation Used in Intellectual Disability Research

Only six articles explicitly defined participation by either using the ICF definition, a definition previously introduced, or a unique definition. It is clear that when the term participation is used in the intellectual disability literature, it is used in a generic sense (e.g., taking part in something) and not as a larger construct. Of the definitions used, Wennberg and Kjellberg's (2015) definition was unique in that it highlighted the importance of having control and making decisions. These themes are related to self-determination, recognize that people have agency, and have been used in definitions of participation in the larger rehabilitation literature (e.g., Hammel et al., 2008; Perenboom & Chorus, 2003).

Domains of Participation

We used domains of participation described by AAIDD (leisure, home living, work, education, spiritual, and cultural) for our review, and all such domains were represented in the literature. Researchers have most often explored participation in leisure activities, such as shopping, exercising, reading, or gardening. The next most frequently researched participation domains, in order of frequency, were work, home living, and education. Although these domains have been researched since 2001, in the last 5 years of the time period covered by the literature review, researchers explored additional domains such as cultural participation (e.g., volunteering, attending concerts), spiritual participation (e.g., religious activities), or civic or health participation (e.g., voting, doctor's visits; Gray et al., 2014; Iriarte et al., 2014). This broadening of participation domains may reflect a supports-based model of disability and the self-advocacy movement that promotes examination of “a full-life” (Thompson et al., 2009) by focusing on understanding how people with intellectual disability can live, learn, work, and play in their communities. Future research should continue to explore participation across multiple life contexts and the interactive effect of meaningful participation across multiple domains. Such research should also examine more robust and diverse measurement approaches. For example, a wide body of research exists on measuring social networks and social capital above and beyond frequency of contacts or interactions (see Fisher & Shogren, 2015; Kamstra, van der Putten, & Vlaskamp, 2014). Addressing these more complex constructs would allow for a more nuanced understanding of participation (Wasserman & Faust, 1994).

Nature of Participation

When looking at issues related to the individualized nature of participation, the majority of the participation literature has focused on issues of access, which was a logical place to begin, particularly as people with intellectual disability had increased opportunities to more fully participate in their communities. A person cannot participate if they do not have access to inclusive environments. Few studies, however, have moved beyond access issues to focus on understanding the meaning of participation for people with intellectual disability, particularly across multiple life domains.

This finding may be impacted by the lack of emphasis in current definitions and measurement frameworks on the meaning, choice, or responsibility aspects of participation. Certainly, some participation researchers have stressed the importance of understanding subjective aspects of participation in measurement and argue an observer cannot understand the meaning another person gets from his or her level of participation (Coster & Khetani, 2008; Hammel et al., 2008; Ueda & Okawa, 2003). However, additional research is needed to examine how to assess personal perceptions and preferences related to participation with people with varying levels of support needs. Existing research on supporting people with intellectual disability to self-report perceptions can guide this work (Fujiura & RRTC Expert Panel on Health Measurement, 2012; Stancliffe, Tichá, Larson, Hewitt, & Nord, 2015). Using supports, such as providing multiple means of responding, text simplification, and visual supports can assist respondents' understanding of abstract concepts. However, a first step in this work is to develop a consensus definition of participation that can guide efforts.

Implications for Defining Participation in the Intellectual Disability Field

The results of this review suggested that there is not a clearly accepted definition or framework for understanding participation that can be used to guide research, assessment, and supports planning in the intellectual disability field. Our purpose in conducting this review was to provide a picture of the current status of research in participation in the intellectual disability field. The review suggested that while representing a smaller body of work, there is growing attention being directed not only toward access/opportunity and inclusion, but also factors related to the individualized nature of participation including meaningful engagement, choice and control, and responsibility. However, these elements of participation are not currently well represented or agreed upon in definitions of participation, and assessment tools are not available that provide a reliable means of capturing this information. Further, there is a growing recognition that participation extends across multiple domains of life (beyond recreation/leisure and employment or education) and that these traditionally under-researched domains, such as cultural and spiritual domains, can have significant meaning for some people with disabilities. Thus, each of these elements is critical to consider in building a definition of participation. The results of this review, connected with existing definitions of participation in the broader disability field and our own work on the applications of social-ecological models of disability to the intellectual disability field, can be used to consider key elements of a definition and or assessment framework for participation for the intellectual disability field.

Conclusion

The intellectual disability field has been increasingly focused on participation as an outcome, yet no cohesive definition has been provided. The aim of this study was to review the intellectual disability literature from 2001 to 2015 using domains identified in AAIDD's Definition, Classification, and Systems of Support manual as well as themes from an existing framework of participation developed from the perspective of people with disabilities. We found that although all domains and themes were represented in the literature, research to date has focused primarily on the domains of leisure and work and the themes of access and inclusion. Themes reflecting the individual nature of participation, such as meaning, choice, and responsibility are less represented in the participation literature.

In our review, we found no consensus on a definition of participation. The rehabilitation literature has made strides in refining the ICF definition of participation to better support measurement, yet no comprehensive definition exists. Future work is needed to develop a definition of participation that integrates existing definitions from the rehabilitation literature with elements from the intellectual disability literature. Such work has the potential to inform measurement and intervention efforts in the field.

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Author notes

The authors would like to thank the Borchardt Family Scholarship Fund at the Beach Center on Disability, University of Kansas for funding this research.