Conceptions Of Participation In Students With Disabilities
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C 2004) Journal of Developmental and Physical Disabilities, Vol. 16, No. 3, September 2004 (°
Conceptions of Participation in Students With Disabilities and Persons in Their Close Environment Lilly Eriksson1,2,3 and Mats Granlund1,2
Participation can be viewed as engagement in life situations and is often mentioned as a goal in relation to providing service to children with disabilities. Age-related differences in children’s, parents’, teachers’, and consultants’ conceptions of participation were investigated. Information on conceptions of participation was collected in conjunction with a larger survey of participation in school environments. The sample consisted of students with disabilities in all ages, their parents, teachers, and special education consultants. Respondents’ definition of participation were inductively analyzed; in a second step a log-linear analysis was made on the basis of the themes from the qualitative analysis and related to students’ chronological age and type of disability. Results indicated that students’ conceptions of participation to a certain degree depended on age but not on type of disability. Respondents, other then students, tended to have a wider conception of participation suggesting that parents’, teachers’, and consultants’ role and responsibility in relation to the student affects their conceptions of participation. KEY WORDS: participation; students with disabilities; age differences; log-linear analysis.
The health-related concept participation is frequently used in relation to providing service to children and youth with disabilities. Participation in life situations is seen as an important goal for intervention. Being able to participate in one’s living environment and school situation is emphasized as a human right. However, the concept of participation has been given several 1 Department
of Social Science, University of Malardalen, ¨ Vaster ¨ as, ˚ Sweden. Research Foundation, Stockholm, Sweden. whom correspondence should be addressed at Department of Social Science (ISB), University of Malardalen, ¨ Box 883, Vaster ¨ as, ˚ Sweden; e-mail: [email protected].
2 ALA 3 To
229 C 2004 Plenum Publishing Corporation 1056-263X/04/0900-0229/0 °
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definitions, which makes it interesting to see how children and students with disability themselves conceive participation. In ICF (International Classification of Functioning, 2001) participation has been defined as “involvement in life situations” (p. 7). Common to most definitions of participation is the importance assigned to motivation and engagement (Paldanius, 1999). In child development research engagement has been defined as “the time spent interacting with the environment in a developmentally and contextually appropriate manner” (Mahler Ridley et al., 2000, p. 134). In ICF, the classification system developed by (World Health Organization) for the purpose of giving a standardized structure for defining health, the dimension participation is related to the dimensions body, activity, and environment. Participation is described as a health-related concept focusing on positive expressions of good health, which also is related to personal factors as well as environmental factors. Attitudes and actions of people in the close environment will affect children’s and students’ conceptions of participation. Thus, it is also interesting to investigate how parents, teachers, and special education consultants in the close environment of students with disabilities experience participation. Their conceptions of participation will affect the form and content of the service provided. Information is needed on how students with disability and other persons in their living environment conceive of participation and on how these conceptions change with age. No previous studies have studied age differences in conceptions of participation. Several studies, though, have been conducted that investigate children’s conceptions of health and sickness. These studies indicated that children’s conceptions of health change with age (Bird and Podmore, 1990; Natapoff, 1982; Tinsley, 1992) and that conceptions of health were not related to the subject’s type and severity of disability (Natapoff and Essoka, 1989). In general children perceive health as a positive attribute that allows them to participate in desired activities (Natapoff, 1982). Natapoff (1982) found age differences in how children perceived health; children under 7 years of age rarely mention not being sick as an attribute of health and older children perceive health as something stable over time and illness as something temporary. Banks (1990) did not find any age differences in how children attribute illness to personal actions, but found that older children were more likely than preschool children to give specific reasons for illnesses. Children with disabilities and children without disabilities viewed health similarly, and the conceptions seemed to be more influenced by chronological age than by disability. Both children with disabilities and children without disabilities viewed someone else with disability as unhealthy, but both groups viewed themselves as healthy (Natapoff and Essoka, 1989). Normandeau et al. (1998) related children’s conception of health both to chronological
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age and to the context of their daily life. Their results indicated that children’s conception of health was multidimensional and rooted in their dailylife experience. According to Normandeau et al. (1998) children organized conceptions of health around three main dimensions: functionality, adherence to good lifestyle health habits, and mental health. The authors found age differences in the conception of health that may reflect changes in children’s cognitive development consistent with Piaget’s theories. It can also reflect differences in the children’s organization of information into schema on the basis of their firsthand experience with health-related socialization actions. According to Bronfenbrenner’s (1999) ecological framework, the surrounding system affects the individual at different levels of interaction. These interactions can be observed at the micro-, meso-, exo-, and macro-levels. Participation is a phenomenon characterized by engagement and motivation that exists and can be observed at each of these levels (Paldanius, 1999). It can be observed in the interaction processes between a person and the environment in the micro-system, and as involvement in interaction between micro-systems at the meso-system level, for example, student planning IEP in collaboration with parents and teachers. At the exo- and macro-level, participation is related to democracy. It was therefore interesting to compare conceptions of participation in children and students with disabilities with the conceptions of parents and teachers in their micro-systems and special education consultants in their exo-systems. Subject characteristics were also related to conceptions of health, the more internally a child scored on a locus of control measure the more sophisticated were the clues he or she used to identify sickness or health (Tinsley, 1992). Conceptions of participation may also be related to subject characteristics that facilitate an active involvement with the environment. Selfdetermination, for example, is defined as “acting as the primary casual agent in one’s life and making choices and decisions regarding one’s quality of life free from undue external influence or interference” (Wehmeyer, 1996). Self-determination, however, is more than a collection or composite of skills, knowledge, or beliefs; rather, it is the result of a dynamic interaction between individuals and the environment in which they live (Abery and Stancliffe, 1996). Persons with disabilities had fewer opportunities than persons without disabilities to develop their skills related to self-determination (Wehmeyer, 1996); that is, they experienced participation restrictions. Simeonsson et al. (2001) have applied the concept of “quality of life” to evaluate school environments for children and adults with disabilities in relation to participation. After asking teachers they reported that students with more severe disabilities had a lower degree of participation and a lower quality of life than students with a mild to moderate disability.
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To conclude, participation is related to positive conceptions of health, by definition. Previous research concerning children’s conceptions of health indicated that there exists a relation between their conceptions of health and chronological age, but not between whether a child has a disability or not and conceptions of health. In our study conceptions of participation of students, parents, teachers, and special education consultants are compared and related to students’ chronological age and type of disability. The parents, teachers, and special education consultants are viewed as important persons in the students living environment. The purpose was to investigate if conceptions of participation in children and students with disabilities were related to chronological age. A second purpose was to investigate if conceptions of participation were related to the type of disability of the students. A third purpose was to study how important persons in the students’ close environment conceived participation, and to investigate if the conceptions differed depending on role of the respondents, the students’ age, or type of disability.
METHOD Information on conceptions of participation was collected in conjunction with a larger survey of participation in school environments of students with disabilities (Almqvist and Granlund, accepted Granlund et al., 2003).
Subjects The sample of subjects consisted of students with disabilities (n = 674). They were divided into four age groups: CA 1–6 (n = 157, M ≈ 4.9, SD = 1.37), 7–12 (n = 251, M ≈ 10, SD = 1.56) 13–17 (n = 197, M ≈ 15, SD = 1.51), and adults (n = 69, M ≈ 22.5, SD = 8.09). Their parents/relatives (n = 616), teachers/managers (n = 619), and special education consultants (n = 110) participated as well. A total of 2,397 questionnaires from students, parents, teachers, and counselors were gathered. Students, parents, and teachers responded to one questionnaire each. Special education consultants in average responded to questionnaires regarding 7 students. The information was collected from all parts of Sweden by special education consultants responsible for consultation services to different groups of students with disabilities (visual disability, motor disability, multiple disability, or adults with deaf-blindness). Consultants were instructed to collect information from 10 individuals each. Selected individuals should represent all chronological ages within the age groups served by the special education
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Table I. The Number of Students in Different Age and Type of Disability Groups Age
Visually disability
Motor disability
Multiple disabilities
1–6 years 7–12 years 13–17 years Adults Total
156 93 66 19 334
90 74 12 176
1 68 57 18 144
Deaf-blindness
Total
16 16
157 251 197 65 670
consultants, but was otherwise a convenience sample. The distribution of gender was 46% boys and 49% girls, 4% did not report gender. In Table I the number of students who participated in the survey categorized according to age and type of disability is displayed. Only individuals for whom the special education consultants filled in a questionnaire are represented. Therefore, total number of individuals is not equal to number of individuals for each respondent group. In 24 cases, students, teachers, and/or parents responded, but not the special education consultants. In the survey a total of 69% of the respondents gave their conceptions of participation. Students had the lowest proportion of responders, 56%; parents had 68%; teachers had 68%; and special education consultants had 84%. Parents, teachers, and consultants were more likely to respond when the child was 1–6-year-old (82% response rate) than if the student was an adult (71%). Among the students, adults had the lowest response rate. Information about the students’ type and severity of disability was collected from the special education consultants with help of Abilities Index, (Simeonsson and Bailey, 1988, translated to Swedish by Simeonsson, and revised by Roll-Pettersson and Granlund). Table II displays the distribution of different types of disability among the students. Table II. Distribution of Type of Disability Among Students in Different Age Groups Disability
1–6 year
7–12 year
13–17 year
Adult
Hearing Motor ability General health Social functioning Behavior Implicit communication Explicit communication Visual Cognitive function Muscle tone hypertension Muscle tone hypotension
5 37 15 81 78 75 76 148 55 40 27
7 50 22 56 56 44 47 63 36 37 33
9 29 15 48 49 42 46 60 36 36 29
11 10 5 32 32 21 25 39 23 10 10
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Eriksson and Granlund Table III. Number of Disabilities Displayed by Students in Different Age Groups
1 disability 2 disabilities 3 or more disabilities
1–6 year
7–12 year
13–17 year
Adults
59 14 62
44 29 26
37 27 36
25 15 21
In Table III the number of students with one, two, or more disabilities in three age groups is displayed. Severity of cognitive disability has been investigated for the student. In the age group 1–6 years, 28 students had a severe to profound disability and 29 had a mild to moderate cognitive disability (SD = 1.72). In the age group 7–12 years, 14 students had a severe to profound cognitive disability and 51 had a mild to moderate disability (SD = 1.32). In the age group 13–17 years, there were 9 students with a severe to profound cognitive disability and 51 with a mild to moderate disability (SD = 1.30). A total of 4 adult students had a severe to profound cognitive disability and 22 had a mild to moderate cognitive disability (SD = 1.49). Material The open-ended question analyzed in this study was one of several questions in a larger survey concerning participation in school environments of students with disabilities in Sweden. The questionnaire consisted of both closed- and open-ended questions. The question used in this study, Describe what You think participation is, what does it mean to You, was the first question in the material. Data Analysis The responses given by the subjects were first written in text files and categorized by respondent group and students chronological age. This generated 15 groups on the basis of four different respondent groups and four different chronological ages. Because children in the age group 1–6 did not respond to the open-ended question, only three groups of students were generated. The generated files were analyzed separately. In the next step all text files within a respondent group were analyzed together. When reading through the text files, “units of meaning” were identified by the first author. These units were categorized inductively in themes. All identified themes were then compared to find patterns within a respondent group or age group; that is, subcategories. Categorization of the “units of meaning” in themes and subcategories was reviewed by the second author. After a discussion between the authors, a renaming of some subcategories was made.
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Categories and themes were then related back to the text files to make sure that all conceptions of participation fitted within a category. To find qualitatively different main themes, that is, the “components of participation,” a final analysis of the themes and subcategories was made in collaboration between the first and second authors. In a second step, a quantitative log-linear analysis was carried out on the basis of the themes from the qualitative analysis. Each subject’s “units of meaning” were coded into SPSS files (Statistical Package for the Social Sciences) on the basis of the themes. If the subject had mentioned a theme, for example self-determination, the response was coded as 2 for “yes” and if not, 1 for “no.” Both internal and external missing values were coded as missing values. The analysis was based on a contingency table. In each cell of the table, number of individuals that had mentioned or had not mentioned a certain conception of participation was displayed. In log-linear analysis it is meaningful to speak of interaction effects and main effects in relation to total frequency of observations in a cell. First, a saturated model for the cell frequencies is created. The next step is to remove the highest order interaction, to determine the effect this would have upon the closeness with which the model predicts the cell frequencies. Assessment of the goodness of fit at each stage of the procedure is made by a likelihood ratio (Kinnear and Gray, 2001). The final model is evaluated by comparing the observed and expected frequencies for each cell using the likelihood ratio. No remaining term should have a probability higher than 0.05 to affect the likelihood ratio. In this study only two variables at the time were compared. Thus, only the interaction effect between the two variables and the main effect were analyzed. A log-linear analysis can show whether there is an interaction effect or not, but it does not show in which cell the interaction effect occurs. Factors investigated in this study in relation to conceptions of participation were students’ age, the students’ type of disability, and participator group membership. RESULTS Results of the qualitative analysis are presented first, because the quantitative analysis is based on the initial qualitative analysis. Qualitative Analysis Main Themes Three main themes or “components” of participation appeared to be activity, feeling of participation, and context. The components are interrelated.
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The most important of the three is activity, which is the productive part of participation. To experience participation, to be active in one’s environment, and to be viewed by others as a participator are important. Activity and experience of participation is dependent on the context. It is through activity within a specific context that the individual experience a positive feeling of participation. Such a feeling is mainly a subjective experience, while activity and context are dimensions that other participator groups also experience. Students often described participation in terms of the feeling of participation or as the context. Parents and teachers focused more on activity and the special education consultants are concerned with both context and activity. A total of nine themes appeared in the analysis that relates to how the subjects experience participation. 1. Characteristics/self-esteem. An internal experience and understanding of one self, for example, to take an active interest in a phenomenon or to have self-confidence. “To feel that you are worth something. To feel needed” (adult). “That everybody feels important. A condition for future participation in society is a good and sound self-esteem” (teacher 7–12 years).
2. Fellowship is about belonging, to be part of something, to experience an interaction with other people. Fellowship describes being part of a group, and others confirm me as a part of the group. “Participation is about being treated equal and being missed when not there” (teacher 2–6 years). “To be a part of the group (student 7–12 years), and not outside it” (student 13–17 years). “To actively take part of the social togetherness (parent 13–17 years), to experience fellowship in meeting other people” (special education consultant 7–12 years).
3. Communication, to receive and give information, to communicate and discuss with others, to be respected, and to have an interaction on equal grounds. To be able to receive information that can be understood. “That parents and teachers can discuss and accept each others opinions and way of working” (teacher 2–6 years). “Participation is about feeling that you know how things work and that you are getting enough information about them” (parent 7–12 years). “Being able to receive information. Having possibilities to communicate. Having access to both the spoken and written language” (special education consultant 2–6 years).
4. Being a part of activities, to actively participate and choose activities that one is interested in. To take part and not just be there. “Participation shouldn’t just be physical presence, but full participation at every level” (parent 7–12 years). “The student is active and participate in
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a context—the participation level can vary, it can be more or less passive” (teacher adult). “You are part of different activities outside school, such as sledge-driving, basketball, bowling, and watching soccer” (adult).
5. Self-determination, to be able to influence the situation, to be able to choose and be given choices, and to decide and to rule over these choices. “That the students can affect their school day by us finding in every student a way to choose in different situations” (relative adult). “A possibility for me to choose between different activities” (student 7–12 years).
6. Prerequisites for taking part in activities, to participate on the basis of different criteria and conditions that facilitate or restrict opportunities to participate. “That I will be able to do the same activities that my friends do” (student 7–12 years). “Participating in activities on equal conditions” (teacher 13– 17 years).
7. The role of the adult. The teachers experience it as important to encourage and support the children’s participation. “That there is a supportive adult that is always a step ahead” (teacher 7– 12 years). “When you feel responsibility, interest, emotional engagement towards the child. If participation is to be possible there must be people who are engaged and who obtain the knowledge needed to be a support to the child” (teacher 2–6 years).
8. Conditions in the living environment. Factors outside the student, which the student cannot influence directly such as conditions in the physical environment, the community or in other persons. “Planning and adjusting the activity based on the persons ability to participate, reassuring that everybody can share the content and aim of the activity” (special education consultant 2–6 years). “Shall have the possibility to receive the same education as others. The right to have a job” (relative adult). “Participating is also about that the communities; cultural events are open for everybody” (adult).
9. Physical environments. The availability of the environment, the environmental adaptations a person requires to be physically active in that environment. “When the physical environment is adapted so there are no obstacles in it that stops me from participating” (special education consultant 7–12 years).
In Table IV the distributions of themes among respondent groups are displayed. Most of the themes contained statements from all respondent groups. There were, however, some exceptions. None of the students’ statements were found in the theme “communication.” Teachers were the only group
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Eriksson and Granlund Table IV. Themes Mentioned by Different Respondent Groups Respondent group Themes
Student
Parent
Teacher
Consultant
Characteristics/self-esteem Fellowship Communication Being part of activities Self-determination Prerequisites for taking part Conditions in the living environment The role of the adult Physical environment
x x
x x x x x x x
x x x x x x x x
x x x
x x x x
x x x x
who mentioned “the role of the adult,” and “physical environment” were only mentioned by special education consultants (see Table IV). In addition, students did not mention “conditions in the living environment” as frequently as other participator groups did. To conclude, all participator groups had rather similar conceptions of participation. Parents, teachers, and special education consultants had relatively similar definitions of participation, which mainly contain expanded versions of what students conceived as participation. Age differences in conceptions were found in “characteristics/selfesteem.” Students in the age group between 7 and 12 years often described a perception of “engagement,” while older students emphasized selfconfidence. Also within the theme “self-determination” age differences were observed. Students between 7 and 12 years described self-determination in terms of “being a part of and deciding” and being able to “choose,” while students between 13 and 17 years focused on “self-government” and “democracy.” Adults also stated that “democracy” was important as well as receiving “information from society.” Conceptions formulated by other participator groups also seemed to vary with the students’ chronological age but primarily with the participator’s role and responsibility. Parents experienced that their participation and their involvement were important in their children’s life, especially when the student was young. Parents of children between 2 and 6 years often stated that their children needed to be active on the “basis of their abilities,” while parents with teenager or adults felt that “equal terms” were important. While parents defined security as a part of participation, students did not mention it. It was important for parents to be able to “communicate” with other participators in the students living environment. Parents often mentioned that resources and planning of school activities were important for students’ participation. Teachers and special education consultants did not mention
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resources, but also felt that planning activities were important. In general, parents, teachers, and special education consultants showed a tendency to have a broader conception of participation than students.
Quantitative Analysis The following age groups were used to make more detailed age comparisons: (a) 2–4 years, (b) 5–6 years, (c) 7–9 years, (d) 10–12 years, (e) 13–15 years, (f) 16–17 years, (g) 18–20 years, and (h) 20 years and above. Log-linear analyses were computed on the basis of the themes found in the qualitative analysis. Analyses were made on the basis of eight age groups, four respondent groups, five types of disabilities, and seven of the themes of participation. The two themes in which only responses from either teachers or special education consultants were found (“physical environment,” “the role of the adults”) were excluded. Concerning the students’ conceptions of participation, the most common conception of participation was “being part in activities.” Forty-eight percent of the students mentioned it as a part of their definition of participation. Only one statistically significant difference between age groups was found. Statements about “conditions in the living environment” interacted with age (χ 2 = 13.2, p < .05). Students in the age group 16–17 years did not mention “conditions in the living environment,” while almost one third (32%) of the adults mentioned it. Concerning conceptions of participation of other respondent groups, parents and the teachers often defined participation as “being part in activities.” Forty-six percent mentioned it as a part of their definition. Other frequent definitions were “fellowship” (47% of the parents, teachers, and consultants) and “prerequisites for taking part in activities” (52% of the parents, teachers, and consultants definitions of participation). Age of the student interacted with the parents, teachers, and consultants’ definitions of participation in three themes. It was more common for parents, teachers, and special education consultants to define fellowship (χ 2 = 21.9, p < .05) as a part of participation for 10–12-year-old student (54%) than for 2–4-year-olds (37%). In addition, “Prerequisites for taking part in activities” (χ 2 = 27.3, p < .05) was not experienced as important for 2–4-year-olds (44%) as it was for 5–6-year-old students (66%). Finally, “conditions in the living environment” (χ 2 = 20.35, p < .05) were not mentioned as often for teenagers (27%), as it was for 5–6-year-olds (46%). Respondent-group membership (student, parent, teacher, and consultant) interacted with the theme fellowship (χ 2 = 82.9, p < .05), the group of special education consultants statistically differed from the other groups,
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nearly 60% of the consultants mentioned “fellowship” as a part of participation, while around 35% of the students, parents, and teachers mentioned it. Students were not represented in the theme “communication,” a theme that one third (33%) of the other respondents mentioned. Respondent-group membership also interacted with the theme “prerequisites for taking part in activities” (χ 2 = 237.9, p < .05) which was not as important for the students (16%) as it was for their parents (38%) and teachers (39%). A third interaction with respondent group membership showed that the special education consultants (43%) mentioned “conditions in the environment” (χ 2 = 14.0, p < .05) more frequently than the other respondents (23%). When investigating the statistical relations between students’ type of disability and conceptions of participation, only one significant interaction effect between students’ conceptions of participation and type of disability was found. Persons with deaf-blindness mentioned “self-determination” (χ 2 = 8.26, p < .05) as a part of their conceptions of participation more frequently (73%) than the other disability groups (30%). Parents, teachers, and special education consultants more frequently than the students themselves defined participation differently dependent on the students’ type of disability. “Communication” (χ 2 = 111.3, p < .05) was more frequently mentioned if a student had a motor disability (75%) than if he or she had other types of disabilities (35%). Type of disability also interacted with the theme “self-determination” (χ 2 = 30.27, p < .05) which was more frequently mentioned if the student had multiple disabilities (51%) than if he or she had a visual disability (33%). “Prerequisites for taking part in activities” (χ 2 = 12.3, p < .05) were more frequently mentioned if the student had deaf-blindness (60%) than for students with motor disabilities (44%). “Conditions in the living environment” (χ 2 = 8.08, p < .05) was also more frequently experienced as important for students with deaf-blindness (60%) than for other students (31%).
DISCUSSION The aim of this study was to investigate if conceptions of participation differed depending on student’s age, student’s type of disability, or respondent group. The result reveals that conceptions of participation are more related to respondent-group membership than to student’s age or type of disability. The various respondent groups, parents, teachers, and consultants defined participation on the basis of what role and responsibility they had to the student. Participation was positively conceived by all respondents and was described as an asset. That is, participation is a means to define well-being. The data suggests that the participation concept consists of three
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components. These are activity, feeling of participation, and context. The components are interwoven in the subjects’ descriptions of how they conceptualize participation. Nine themes that describe different aspects of participation were found. The students’ conceptions were represented in seven of these themes, suggesting that students and participators experience participation in a relatively similar way. Conceptions of participation in this study are representative for a large sample of Swedish students with disabilities and persons in their close environment. However, the data collection method did not include random sampling. It restricts the possible generalization to the total population of students with disabilities in Sweden. By using a questionnaire, it was possible to illuminate variations in conceptions of participation in a large sample in a way that would not be possible if interviews were used. The data collection method used, as well as the use of responses to only one question in the analysis, does however restrict the possibilities to understand students’ reasoning about conceptions of participation in depth. Another weakness concerns number of persons who did not give their conceptions of participation. A relatively large proportion of the students did not describe their conceptions. One reason might be that students more than the other respondent groups had difficulties understanding the word participation. However, because the adult students attrition were higher than the younger students, it is more possible that indifference explains the attrition. A weakness in the analysis of the collected conceptions of participation is that only the first author inductively developed the themes and categories of participation. The fact that it was possible to categorize all of the written material into the themes and categories do strengthen the trustworthiness of the categorization. In addition, themes and categories developed were reviewed by the second author where after some of the categories were renamed. This procedure does also strengthen the trustworthiness of the analysis. Because of the lack of information about other characteristics of the respondents than age and role in relation to the student, significant differences found for subject characteristics in the log-linear analyses are difficult to interpret. In future studies a broader collection of data on respondent characteristics is recommended. Students’ conception of participation in all chronological age groups included the themes: “characteristics/self-esteem,” “fellowship,” “taking part in activities,” “self-determination,” “prerequisites for taking part in activities,” and “conditions in the environment.” However, some age differences in the way these dimensions were expressed existed. For example, in the theme “self-determination,” young students (7–12 years) more frequently
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mentioned “being a part of decision making” and “being able to make choices in play,” whereas students 13–17 years were more apt to mention “being self-governed” and “democracy.” Students over 18 wanted to be a “part of society and the democratic process.” Being involved was more important for younger students than for older students who felt that selfconfidence was more important. Adult students also mentioned “conditions in environment” more often than younger students did; 16–17-year-old students did not mention it at all. To conclude, results indicate that aspects of the environment and other more abstract phenomena, such as democracy, are more important to adults than to young students in conceptions of participation. The age-related changes in conceptions of participation observed in this study might reflect changes in student’s cognitive development, consistent with Piaget’s theory. With age the cognitive development allows for more complex definitions of participation. Another explanation to the age-related changes in conceptions are that the life circumstance differs depending on age and person (Normandeau et al., 1998; Tinsley, 1992). Adult students and teenagers are exposed to more diverse environmental settings and demands in the school environment than what young children are. Thus, also the conceptions of participation contain more diverse aspects. Other respondent groups than the students, frequently perceived participation differently depending on the age of the student. “Fellowship” was perceived as more important for 10–12-year-olds than for 2–4-year-olds. To have friends was perceived as more important for 10-year-olds than for 2-year-olds. “Conditions and principles for taking part” seemed to be more important when the students were in the age group 5–6 years or 18–20 years. Results suggest that phases such as starting and ending school are important life transitions, which have an impact on perception of life circumstances. In other words, parents, teachers, and special education consultants’ conceptions of participation are more than those of students’ influenced by context and life phase. It indicates that the respondents’ role and responsibility, in relation to the student, affect conceptions of participation. Our results suggest that participation is a dynamic ecological construct. Its conception is dependent on several factors situated on different ecological levels. Thus, Bronfenbrenner’s ecological framework conveniently can be used as a model of description. The feeling of participation is, of course, within the person (Bronfenbrenner, 1999; Sontag, 1996). Feelings of happiness or sadness in relation to “being a part of activities” are created in interactive processes with the environment within the immediate context. These processes develop and are maintained through the individual’s activities in the context. In general, students’ conceptions of participation
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contained feelings and perceptions of the context in the close environment, while parents’, teachers’, and special education consultants’ expanded concept of participation also included indirect environments, such as home– school collaboration or geographical area for the school. The respondents’ closeness to the student, their role and responsibility influence conceptions of participation. As an example, parents’ conceptions of participation are more similar to the students’ conceptions than those of special education consultants’. Dependence on one’s own experiences on conceptions of participation may explain why students did not mention communication. People who are self-determined perceive themselves to be in control; they make or cause things to happen in their lives (Wehmeyer, 1997). Selfdetermination includes both inner characteristics of a person and the actions of that person. Participation and self-determination can therefore be viewed as partly overlapping concepts. The concept of participation is also related to quality of life. According to Wehmeyer and Schalock (2001), there are eight dimensions in quality of life (emotional well-being, interpersonal relations, material well-being, personal development, physical well-being, self-determination, social inclusion, and rights) that somewhat overlap with the themes found in this study, such as characteristics/self-esteem, fellowship, self-determination. Thus, the concept of participation may be seen as a contemporary expression of the normalization principle developed 40 years ago by Nirje (1969) and Wolfensberger (1980). Our results indicate that when providing services to increase a person’s participation, it is important to gain an understanding of that person’s context and life situation, something only gained through sharing his/her life experiences and perceptions of the living environment. The knowledge about personal circumstances of the persons who gave their conceptions about participation in this study is limited. Because closeness and personal knowledge about a student is important in understanding students’ personal experiences of participation, further studies investigating children and students with disabilities conceptions of participation are needed. This study is focused on conceptions of participation based on a snapshot of perceptions at a particular moment of time. How these conceptions evolve and develop over time cannot be studied with this design. In the study, students’ and other respondents’ conceptions of participation were investigated in relation to students’ chronological age and type of disability, with no direct reference to their close environment. Environmental contingencies may interact with individual characteristics to create different conceptions of participation over time. Longitudinal research is needed on how the conceptions of participation of an individual are influenced over time by the present state of the individual and the present environmental conditions.
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REFERENCES Abery, B., and Stancliffe, R. (1996). The ecology of self-determination. In Sands, D., and Wehmeyer, M. (eds), Self-Determination Across the Life Span, Paul H. Brookes, Baltimore, pp. 111–145. ˚ Almqvist, L., Granlund, M., and Bjorck¨ Akesson, E. (in preparation). Profiles of participation in school environments of students with disabilities. Unpublished paper, Department of Social Sciences, University of Malardalen, ¨ Vaster ¨ as. ˚ Almqvist, L., and Granlund, M. (accepted). Participation in school-activities of children and youth with disabilities. Scandinavian Journal of Psychology. ˚ ˚ Asbrink, M., and Granlund, M. (2000). Ungdomars delaktighet i skolan. Alder 13-17 a˚ r. Elevers skattningsformul¨ar [Youths participation in school, age 13–17, students’ questionnaire]. Paper, Department of Social Science, SIH and University of Malardalen, ¨ Vaster ¨ as. ˚ Banks, E. (1990). Concepts of health and sickness of preschool- and school aged children. CHC 19: 43–48. Bird, E., and Podmore, V. (1990). Childrens understanding of health and illness. Psychol. Health 4: 175–185. Bronfenbrenner, U. (1999). Environments in Developmental perspective: Theoretical and operational models. In Friedman, S., and Wachs, T. (eds.), Measuring Environments Across the Lifespan, American Psychology Association, Washington, DC, pp. 1–28. ˚ Granlund, M., Eriksson, L., Almqvist, L., Luttropp, A., and Bjock¨ Akesson, E. (2003). Delaktighet-Sammanfattning av ett forskningsprojekt [Participation - summary of a research project]. Vaster ¨ as: ˚ Malardalens ¨ hogskola, ¨ Rapportseries CHILD, No 4. International Classification of Functioning (ICF). (2001). Geneva: World Health Organization. Kinnear, P., and Gray, C. (2001). SPSS for Windows Made Simple, Release 10, Psychology Press, Taylor & Francis group, East Sussex. Mahler Ridley, S., McWilliam, R. A., and Oates, C. (2001). Observed engagement as an indicator of childcare program quality. Early Educ. Dev. 11: 133–146. Natapoff, J. (1982). A developmental analysis of children’s ideas of health. Health Educ. Q. 9: 34–45. Natapoff, J., and Essoka, G. (1989). Handicapped and able-bodied children’s ideas of health. J. Sch. Health 59: 436–440. Nirje, B (1969). The normalization principle and its human management implications. In Kugel R. B., and Wolfensberger, W. (eds.), Changing Patterns in Residential Services for the Mentally Retarded, President’s Committee on Mental Retardation, Washington, DC, pp. 179– 195. Normandeau, S., Kalnins, I., Jutras, S., and Hanigan, D. (1998). A description of 5- to 12-year old children’s conception of health within the context of their daily life. Psychol. Health 13: 883–896. ¨ andringar i skilda verkligheter. Paldanius, S. (1999). Delaktighet, demokrati och organisationsfor¨ En kritisk ansats [Participation, democracy and organizational change in different realities. A critical approach], Department of Education and Psychology, University of Sweden, Lindkoping. ¨ Simeonsson, R. J., and Bailey, D. B. (1988). The Abilities Index, Frank Porter Graham Child Development Center, Chapel Hill, NC. Translated to Swedish 1990 by R. J. Simeonsson and revised by L. Roll-Pettersson and M. Granlund, Foundation ALA, Stockholm. Simeonsson, R., Carlson, D., Huntington, G., McMillen, J., and Brent, L. (2001). Students with disabilities: A national survey of participation in school activities. Disabil. Rehabil. 23: 49–63. Sontag, J. (1996). Toward a comprehensive theoretical framework for disability research: Bronfebrenner Revisited. J. Spec. Educ. 30: 319–344. Tinsley, B. J. (1992). Multiple Influences on the acquisition and socialization on children’s health attitudes and behavior: An integrative review. Child Dev. 63: 1043–1069.
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Wehmeyer, M. (1996). Self-Determination as an Educational Outcome, Paul H. Brookes, Baltimore. Wehmeyer, M. (1997). Self-determination as an educational outcome: A definitional framework and implications for intervention. J. Dev. Phys. Disabil. 9: 175–209. Wehmeyer, M., Kelchner, K., and Richards, S. (1996). Essential characteristics of self determined behavior of individuals with mental retardation. American Journal on Mental Retardation 100: 632–642. Wolfensberger, W. (1980). A brief overview of the principle of normalization. In Flynn, R. J., and Nitsch K. E. (eds.), Normalization, Social Integration and Community Service, University Park Press, Baltimore, pp. 7–30.
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C 2004) Journal of Developmental and Physical Disabilities, Vol. 16, No. 3, September 2004 (°
Conceptions of Participation in Students With Disabilities and Persons in Their Close Environment Lilly Eriksson1,2,3 and Mats Granlund1,2
Participation can be viewed as engagement in life situations and is often mentioned as a goal in relation to providing service to children with disabilities. Age-related differences in children’s, parents’, teachers’, and consultants’ conceptions of participation were investigated. Information on conceptions of participation was collected in conjunction with a larger survey of participation in school environments. The sample consisted of students with disabilities in all ages, their parents, teachers, and special education consultants. Respondents’ definition of participation were inductively analyzed; in a second step a log-linear analysis was made on the basis of the themes from the qualitative analysis and related to students’ chronological age and type of disability. Results indicated that students’ conceptions of participation to a certain degree depended on age but not on type of disability. Respondents, other then students, tended to have a wider conception of participation suggesting that parents’, teachers’, and consultants’ role and responsibility in relation to the student affects their conceptions of participation. KEY WORDS: participation; students with disabilities; age differences; log-linear analysis.
The health-related concept participation is frequently used in relation to providing service to children and youth with disabilities. Participation in life situations is seen as an important goal for intervention. Being able to participate in one’s living environment and school situation is emphasized as a human right. However, the concept of participation has been given several 1 Department
of Social Science, University of Malardalen, ¨ Vaster ¨ as, ˚ Sweden. Research Foundation, Stockholm, Sweden. whom correspondence should be addressed at Department of Social Science (ISB), University of Malardalen, ¨ Box 883, Vaster ¨ as, ˚ Sweden; e-mail: [email protected].
2 ALA 3 To
229 C 2004 Plenum Publishing Corporation 1056-263X/04/0900-0229/0 °
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definitions, which makes it interesting to see how children and students with disability themselves conceive participation. In ICF (International Classification of Functioning, 2001) participation has been defined as “involvement in life situations” (p. 7). Common to most definitions of participation is the importance assigned to motivation and engagement (Paldanius, 1999). In child development research engagement has been defined as “the time spent interacting with the environment in a developmentally and contextually appropriate manner” (Mahler Ridley et al., 2000, p. 134). In ICF, the classification system developed by (World Health Organization) for the purpose of giving a standardized structure for defining health, the dimension participation is related to the dimensions body, activity, and environment. Participation is described as a health-related concept focusing on positive expressions of good health, which also is related to personal factors as well as environmental factors. Attitudes and actions of people in the close environment will affect children’s and students’ conceptions of participation. Thus, it is also interesting to investigate how parents, teachers, and special education consultants in the close environment of students with disabilities experience participation. Their conceptions of participation will affect the form and content of the service provided. Information is needed on how students with disability and other persons in their living environment conceive of participation and on how these conceptions change with age. No previous studies have studied age differences in conceptions of participation. Several studies, though, have been conducted that investigate children’s conceptions of health and sickness. These studies indicated that children’s conceptions of health change with age (Bird and Podmore, 1990; Natapoff, 1982; Tinsley, 1992) and that conceptions of health were not related to the subject’s type and severity of disability (Natapoff and Essoka, 1989). In general children perceive health as a positive attribute that allows them to participate in desired activities (Natapoff, 1982). Natapoff (1982) found age differences in how children perceived health; children under 7 years of age rarely mention not being sick as an attribute of health and older children perceive health as something stable over time and illness as something temporary. Banks (1990) did not find any age differences in how children attribute illness to personal actions, but found that older children were more likely than preschool children to give specific reasons for illnesses. Children with disabilities and children without disabilities viewed health similarly, and the conceptions seemed to be more influenced by chronological age than by disability. Both children with disabilities and children without disabilities viewed someone else with disability as unhealthy, but both groups viewed themselves as healthy (Natapoff and Essoka, 1989). Normandeau et al. (1998) related children’s conception of health both to chronological
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age and to the context of their daily life. Their results indicated that children’s conception of health was multidimensional and rooted in their dailylife experience. According to Normandeau et al. (1998) children organized conceptions of health around three main dimensions: functionality, adherence to good lifestyle health habits, and mental health. The authors found age differences in the conception of health that may reflect changes in children’s cognitive development consistent with Piaget’s theories. It can also reflect differences in the children’s organization of information into schema on the basis of their firsthand experience with health-related socialization actions. According to Bronfenbrenner’s (1999) ecological framework, the surrounding system affects the individual at different levels of interaction. These interactions can be observed at the micro-, meso-, exo-, and macro-levels. Participation is a phenomenon characterized by engagement and motivation that exists and can be observed at each of these levels (Paldanius, 1999). It can be observed in the interaction processes between a person and the environment in the micro-system, and as involvement in interaction between micro-systems at the meso-system level, for example, student planning IEP in collaboration with parents and teachers. At the exo- and macro-level, participation is related to democracy. It was therefore interesting to compare conceptions of participation in children and students with disabilities with the conceptions of parents and teachers in their micro-systems and special education consultants in their exo-systems. Subject characteristics were also related to conceptions of health, the more internally a child scored on a locus of control measure the more sophisticated were the clues he or she used to identify sickness or health (Tinsley, 1992). Conceptions of participation may also be related to subject characteristics that facilitate an active involvement with the environment. Selfdetermination, for example, is defined as “acting as the primary casual agent in one’s life and making choices and decisions regarding one’s quality of life free from undue external influence or interference” (Wehmeyer, 1996). Self-determination, however, is more than a collection or composite of skills, knowledge, or beliefs; rather, it is the result of a dynamic interaction between individuals and the environment in which they live (Abery and Stancliffe, 1996). Persons with disabilities had fewer opportunities than persons without disabilities to develop their skills related to self-determination (Wehmeyer, 1996); that is, they experienced participation restrictions. Simeonsson et al. (2001) have applied the concept of “quality of life” to evaluate school environments for children and adults with disabilities in relation to participation. After asking teachers they reported that students with more severe disabilities had a lower degree of participation and a lower quality of life than students with a mild to moderate disability.
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To conclude, participation is related to positive conceptions of health, by definition. Previous research concerning children’s conceptions of health indicated that there exists a relation between their conceptions of health and chronological age, but not between whether a child has a disability or not and conceptions of health. In our study conceptions of participation of students, parents, teachers, and special education consultants are compared and related to students’ chronological age and type of disability. The parents, teachers, and special education consultants are viewed as important persons in the students living environment. The purpose was to investigate if conceptions of participation in children and students with disabilities were related to chronological age. A second purpose was to investigate if conceptions of participation were related to the type of disability of the students. A third purpose was to study how important persons in the students’ close environment conceived participation, and to investigate if the conceptions differed depending on role of the respondents, the students’ age, or type of disability.
METHOD Information on conceptions of participation was collected in conjunction with a larger survey of participation in school environments of students with disabilities (Almqvist and Granlund, accepted Granlund et al., 2003).
Subjects The sample of subjects consisted of students with disabilities (n = 674). They were divided into four age groups: CA 1–6 (n = 157, M ≈ 4.9, SD = 1.37), 7–12 (n = 251, M ≈ 10, SD = 1.56) 13–17 (n = 197, M ≈ 15, SD = 1.51), and adults (n = 69, M ≈ 22.5, SD = 8.09). Their parents/relatives (n = 616), teachers/managers (n = 619), and special education consultants (n = 110) participated as well. A total of 2,397 questionnaires from students, parents, teachers, and counselors were gathered. Students, parents, and teachers responded to one questionnaire each. Special education consultants in average responded to questionnaires regarding 7 students. The information was collected from all parts of Sweden by special education consultants responsible for consultation services to different groups of students with disabilities (visual disability, motor disability, multiple disability, or adults with deaf-blindness). Consultants were instructed to collect information from 10 individuals each. Selected individuals should represent all chronological ages within the age groups served by the special education
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Table I. The Number of Students in Different Age and Type of Disability Groups Age
Visually disability
Motor disability
Multiple disabilities
1–6 years 7–12 years 13–17 years Adults Total
156 93 66 19 334
90 74 12 176
1 68 57 18 144
Deaf-blindness
Total
16 16
157 251 197 65 670
consultants, but was otherwise a convenience sample. The distribution of gender was 46% boys and 49% girls, 4% did not report gender. In Table I the number of students who participated in the survey categorized according to age and type of disability is displayed. Only individuals for whom the special education consultants filled in a questionnaire are represented. Therefore, total number of individuals is not equal to number of individuals for each respondent group. In 24 cases, students, teachers, and/or parents responded, but not the special education consultants. In the survey a total of 69% of the respondents gave their conceptions of participation. Students had the lowest proportion of responders, 56%; parents had 68%; teachers had 68%; and special education consultants had 84%. Parents, teachers, and consultants were more likely to respond when the child was 1–6-year-old (82% response rate) than if the student was an adult (71%). Among the students, adults had the lowest response rate. Information about the students’ type and severity of disability was collected from the special education consultants with help of Abilities Index, (Simeonsson and Bailey, 1988, translated to Swedish by Simeonsson, and revised by Roll-Pettersson and Granlund). Table II displays the distribution of different types of disability among the students. Table II. Distribution of Type of Disability Among Students in Different Age Groups Disability
1–6 year
7–12 year
13–17 year
Adult
Hearing Motor ability General health Social functioning Behavior Implicit communication Explicit communication Visual Cognitive function Muscle tone hypertension Muscle tone hypotension
5 37 15 81 78 75 76 148 55 40 27
7 50 22 56 56 44 47 63 36 37 33
9 29 15 48 49 42 46 60 36 36 29
11 10 5 32 32 21 25 39 23 10 10
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1 disability 2 disabilities 3 or more disabilities
1–6 year
7–12 year
13–17 year
Adults
59 14 62
44 29 26
37 27 36
25 15 21
In Table III the number of students with one, two, or more disabilities in three age groups is displayed. Severity of cognitive disability has been investigated for the student. In the age group 1–6 years, 28 students had a severe to profound disability and 29 had a mild to moderate cognitive disability (SD = 1.72). In the age group 7–12 years, 14 students had a severe to profound cognitive disability and 51 had a mild to moderate disability (SD = 1.32). In the age group 13–17 years, there were 9 students with a severe to profound cognitive disability and 51 with a mild to moderate disability (SD = 1.30). A total of 4 adult students had a severe to profound cognitive disability and 22 had a mild to moderate cognitive disability (SD = 1.49). Material The open-ended question analyzed in this study was one of several questions in a larger survey concerning participation in school environments of students with disabilities in Sweden. The questionnaire consisted of both closed- and open-ended questions. The question used in this study, Describe what You think participation is, what does it mean to You, was the first question in the material. Data Analysis The responses given by the subjects were first written in text files and categorized by respondent group and students chronological age. This generated 15 groups on the basis of four different respondent groups and four different chronological ages. Because children in the age group 1–6 did not respond to the open-ended question, only three groups of students were generated. The generated files were analyzed separately. In the next step all text files within a respondent group were analyzed together. When reading through the text files, “units of meaning” were identified by the first author. These units were categorized inductively in themes. All identified themes were then compared to find patterns within a respondent group or age group; that is, subcategories. Categorization of the “units of meaning” in themes and subcategories was reviewed by the second author. After a discussion between the authors, a renaming of some subcategories was made.
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Categories and themes were then related back to the text files to make sure that all conceptions of participation fitted within a category. To find qualitatively different main themes, that is, the “components of participation,” a final analysis of the themes and subcategories was made in collaboration between the first and second authors. In a second step, a quantitative log-linear analysis was carried out on the basis of the themes from the qualitative analysis. Each subject’s “units of meaning” were coded into SPSS files (Statistical Package for the Social Sciences) on the basis of the themes. If the subject had mentioned a theme, for example self-determination, the response was coded as 2 for “yes” and if not, 1 for “no.” Both internal and external missing values were coded as missing values. The analysis was based on a contingency table. In each cell of the table, number of individuals that had mentioned or had not mentioned a certain conception of participation was displayed. In log-linear analysis it is meaningful to speak of interaction effects and main effects in relation to total frequency of observations in a cell. First, a saturated model for the cell frequencies is created. The next step is to remove the highest order interaction, to determine the effect this would have upon the closeness with which the model predicts the cell frequencies. Assessment of the goodness of fit at each stage of the procedure is made by a likelihood ratio (Kinnear and Gray, 2001). The final model is evaluated by comparing the observed and expected frequencies for each cell using the likelihood ratio. No remaining term should have a probability higher than 0.05 to affect the likelihood ratio. In this study only two variables at the time were compared. Thus, only the interaction effect between the two variables and the main effect were analyzed. A log-linear analysis can show whether there is an interaction effect or not, but it does not show in which cell the interaction effect occurs. Factors investigated in this study in relation to conceptions of participation were students’ age, the students’ type of disability, and participator group membership. RESULTS Results of the qualitative analysis are presented first, because the quantitative analysis is based on the initial qualitative analysis. Qualitative Analysis Main Themes Three main themes or “components” of participation appeared to be activity, feeling of participation, and context. The components are interrelated.
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The most important of the three is activity, which is the productive part of participation. To experience participation, to be active in one’s environment, and to be viewed by others as a participator are important. Activity and experience of participation is dependent on the context. It is through activity within a specific context that the individual experience a positive feeling of participation. Such a feeling is mainly a subjective experience, while activity and context are dimensions that other participator groups also experience. Students often described participation in terms of the feeling of participation or as the context. Parents and teachers focused more on activity and the special education consultants are concerned with both context and activity. A total of nine themes appeared in the analysis that relates to how the subjects experience participation. 1. Characteristics/self-esteem. An internal experience and understanding of one self, for example, to take an active interest in a phenomenon or to have self-confidence. “To feel that you are worth something. To feel needed” (adult). “That everybody feels important. A condition for future participation in society is a good and sound self-esteem” (teacher 7–12 years).
2. Fellowship is about belonging, to be part of something, to experience an interaction with other people. Fellowship describes being part of a group, and others confirm me as a part of the group. “Participation is about being treated equal and being missed when not there” (teacher 2–6 years). “To be a part of the group (student 7–12 years), and not outside it” (student 13–17 years). “To actively take part of the social togetherness (parent 13–17 years), to experience fellowship in meeting other people” (special education consultant 7–12 years).
3. Communication, to receive and give information, to communicate and discuss with others, to be respected, and to have an interaction on equal grounds. To be able to receive information that can be understood. “That parents and teachers can discuss and accept each others opinions and way of working” (teacher 2–6 years). “Participation is about feeling that you know how things work and that you are getting enough information about them” (parent 7–12 years). “Being able to receive information. Having possibilities to communicate. Having access to both the spoken and written language” (special education consultant 2–6 years).
4. Being a part of activities, to actively participate and choose activities that one is interested in. To take part and not just be there. “Participation shouldn’t just be physical presence, but full participation at every level” (parent 7–12 years). “The student is active and participate in
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a context—the participation level can vary, it can be more or less passive” (teacher adult). “You are part of different activities outside school, such as sledge-driving, basketball, bowling, and watching soccer” (adult).
5. Self-determination, to be able to influence the situation, to be able to choose and be given choices, and to decide and to rule over these choices. “That the students can affect their school day by us finding in every student a way to choose in different situations” (relative adult). “A possibility for me to choose between different activities” (student 7–12 years).
6. Prerequisites for taking part in activities, to participate on the basis of different criteria and conditions that facilitate or restrict opportunities to participate. “That I will be able to do the same activities that my friends do” (student 7–12 years). “Participating in activities on equal conditions” (teacher 13– 17 years).
7. The role of the adult. The teachers experience it as important to encourage and support the children’s participation. “That there is a supportive adult that is always a step ahead” (teacher 7– 12 years). “When you feel responsibility, interest, emotional engagement towards the child. If participation is to be possible there must be people who are engaged and who obtain the knowledge needed to be a support to the child” (teacher 2–6 years).
8. Conditions in the living environment. Factors outside the student, which the student cannot influence directly such as conditions in the physical environment, the community or in other persons. “Planning and adjusting the activity based on the persons ability to participate, reassuring that everybody can share the content and aim of the activity” (special education consultant 2–6 years). “Shall have the possibility to receive the same education as others. The right to have a job” (relative adult). “Participating is also about that the communities; cultural events are open for everybody” (adult).
9. Physical environments. The availability of the environment, the environmental adaptations a person requires to be physically active in that environment. “When the physical environment is adapted so there are no obstacles in it that stops me from participating” (special education consultant 7–12 years).
In Table IV the distributions of themes among respondent groups are displayed. Most of the themes contained statements from all respondent groups. There were, however, some exceptions. None of the students’ statements were found in the theme “communication.” Teachers were the only group
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Eriksson and Granlund Table IV. Themes Mentioned by Different Respondent Groups Respondent group Themes
Student
Parent
Teacher
Consultant
Characteristics/self-esteem Fellowship Communication Being part of activities Self-determination Prerequisites for taking part Conditions in the living environment The role of the adult Physical environment
x x
x x x x x x x
x x x x x x x x
x x x
x x x x
x x x x
who mentioned “the role of the adult,” and “physical environment” were only mentioned by special education consultants (see Table IV). In addition, students did not mention “conditions in the living environment” as frequently as other participator groups did. To conclude, all participator groups had rather similar conceptions of participation. Parents, teachers, and special education consultants had relatively similar definitions of participation, which mainly contain expanded versions of what students conceived as participation. Age differences in conceptions were found in “characteristics/selfesteem.” Students in the age group between 7 and 12 years often described a perception of “engagement,” while older students emphasized selfconfidence. Also within the theme “self-determination” age differences were observed. Students between 7 and 12 years described self-determination in terms of “being a part of and deciding” and being able to “choose,” while students between 13 and 17 years focused on “self-government” and “democracy.” Adults also stated that “democracy” was important as well as receiving “information from society.” Conceptions formulated by other participator groups also seemed to vary with the students’ chronological age but primarily with the participator’s role and responsibility. Parents experienced that their participation and their involvement were important in their children’s life, especially when the student was young. Parents of children between 2 and 6 years often stated that their children needed to be active on the “basis of their abilities,” while parents with teenager or adults felt that “equal terms” were important. While parents defined security as a part of participation, students did not mention it. It was important for parents to be able to “communicate” with other participators in the students living environment. Parents often mentioned that resources and planning of school activities were important for students’ participation. Teachers and special education consultants did not mention
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resources, but also felt that planning activities were important. In general, parents, teachers, and special education consultants showed a tendency to have a broader conception of participation than students.
Quantitative Analysis The following age groups were used to make more detailed age comparisons: (a) 2–4 years, (b) 5–6 years, (c) 7–9 years, (d) 10–12 years, (e) 13–15 years, (f) 16–17 years, (g) 18–20 years, and (h) 20 years and above. Log-linear analyses were computed on the basis of the themes found in the qualitative analysis. Analyses were made on the basis of eight age groups, four respondent groups, five types of disabilities, and seven of the themes of participation. The two themes in which only responses from either teachers or special education consultants were found (“physical environment,” “the role of the adults”) were excluded. Concerning the students’ conceptions of participation, the most common conception of participation was “being part in activities.” Forty-eight percent of the students mentioned it as a part of their definition of participation. Only one statistically significant difference between age groups was found. Statements about “conditions in the living environment” interacted with age (χ 2 = 13.2, p < .05). Students in the age group 16–17 years did not mention “conditions in the living environment,” while almost one third (32%) of the adults mentioned it. Concerning conceptions of participation of other respondent groups, parents and the teachers often defined participation as “being part in activities.” Forty-six percent mentioned it as a part of their definition. Other frequent definitions were “fellowship” (47% of the parents, teachers, and consultants) and “prerequisites for taking part in activities” (52% of the parents, teachers, and consultants definitions of participation). Age of the student interacted with the parents, teachers, and consultants’ definitions of participation in three themes. It was more common for parents, teachers, and special education consultants to define fellowship (χ 2 = 21.9, p < .05) as a part of participation for 10–12-year-old student (54%) than for 2–4-year-olds (37%). In addition, “Prerequisites for taking part in activities” (χ 2 = 27.3, p < .05) was not experienced as important for 2–4-year-olds (44%) as it was for 5–6-year-old students (66%). Finally, “conditions in the living environment” (χ 2 = 20.35, p < .05) were not mentioned as often for teenagers (27%), as it was for 5–6-year-olds (46%). Respondent-group membership (student, parent, teacher, and consultant) interacted with the theme fellowship (χ 2 = 82.9, p < .05), the group of special education consultants statistically differed from the other groups,
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nearly 60% of the consultants mentioned “fellowship” as a part of participation, while around 35% of the students, parents, and teachers mentioned it. Students were not represented in the theme “communication,” a theme that one third (33%) of the other respondents mentioned. Respondent-group membership also interacted with the theme “prerequisites for taking part in activities” (χ 2 = 237.9, p < .05) which was not as important for the students (16%) as it was for their parents (38%) and teachers (39%). A third interaction with respondent group membership showed that the special education consultants (43%) mentioned “conditions in the environment” (χ 2 = 14.0, p < .05) more frequently than the other respondents (23%). When investigating the statistical relations between students’ type of disability and conceptions of participation, only one significant interaction effect between students’ conceptions of participation and type of disability was found. Persons with deaf-blindness mentioned “self-determination” (χ 2 = 8.26, p < .05) as a part of their conceptions of participation more frequently (73%) than the other disability groups (30%). Parents, teachers, and special education consultants more frequently than the students themselves defined participation differently dependent on the students’ type of disability. “Communication” (χ 2 = 111.3, p < .05) was more frequently mentioned if a student had a motor disability (75%) than if he or she had other types of disabilities (35%). Type of disability also interacted with the theme “self-determination” (χ 2 = 30.27, p < .05) which was more frequently mentioned if the student had multiple disabilities (51%) than if he or she had a visual disability (33%). “Prerequisites for taking part in activities” (χ 2 = 12.3, p < .05) were more frequently mentioned if the student had deaf-blindness (60%) than for students with motor disabilities (44%). “Conditions in the living environment” (χ 2 = 8.08, p < .05) was also more frequently experienced as important for students with deaf-blindness (60%) than for other students (31%).
DISCUSSION The aim of this study was to investigate if conceptions of participation differed depending on student’s age, student’s type of disability, or respondent group. The result reveals that conceptions of participation are more related to respondent-group membership than to student’s age or type of disability. The various respondent groups, parents, teachers, and consultants defined participation on the basis of what role and responsibility they had to the student. Participation was positively conceived by all respondents and was described as an asset. That is, participation is a means to define well-being. The data suggests that the participation concept consists of three
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components. These are activity, feeling of participation, and context. The components are interwoven in the subjects’ descriptions of how they conceptualize participation. Nine themes that describe different aspects of participation were found. The students’ conceptions were represented in seven of these themes, suggesting that students and participators experience participation in a relatively similar way. Conceptions of participation in this study are representative for a large sample of Swedish students with disabilities and persons in their close environment. However, the data collection method did not include random sampling. It restricts the possible generalization to the total population of students with disabilities in Sweden. By using a questionnaire, it was possible to illuminate variations in conceptions of participation in a large sample in a way that would not be possible if interviews were used. The data collection method used, as well as the use of responses to only one question in the analysis, does however restrict the possibilities to understand students’ reasoning about conceptions of participation in depth. Another weakness concerns number of persons who did not give their conceptions of participation. A relatively large proportion of the students did not describe their conceptions. One reason might be that students more than the other respondent groups had difficulties understanding the word participation. However, because the adult students attrition were higher than the younger students, it is more possible that indifference explains the attrition. A weakness in the analysis of the collected conceptions of participation is that only the first author inductively developed the themes and categories of participation. The fact that it was possible to categorize all of the written material into the themes and categories do strengthen the trustworthiness of the categorization. In addition, themes and categories developed were reviewed by the second author where after some of the categories were renamed. This procedure does also strengthen the trustworthiness of the analysis. Because of the lack of information about other characteristics of the respondents than age and role in relation to the student, significant differences found for subject characteristics in the log-linear analyses are difficult to interpret. In future studies a broader collection of data on respondent characteristics is recommended. Students’ conception of participation in all chronological age groups included the themes: “characteristics/self-esteem,” “fellowship,” “taking part in activities,” “self-determination,” “prerequisites for taking part in activities,” and “conditions in the environment.” However, some age differences in the way these dimensions were expressed existed. For example, in the theme “self-determination,” young students (7–12 years) more frequently
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mentioned “being a part of decision making” and “being able to make choices in play,” whereas students 13–17 years were more apt to mention “being self-governed” and “democracy.” Students over 18 wanted to be a “part of society and the democratic process.” Being involved was more important for younger students than for older students who felt that selfconfidence was more important. Adult students also mentioned “conditions in environment” more often than younger students did; 16–17-year-old students did not mention it at all. To conclude, results indicate that aspects of the environment and other more abstract phenomena, such as democracy, are more important to adults than to young students in conceptions of participation. The age-related changes in conceptions of participation observed in this study might reflect changes in student’s cognitive development, consistent with Piaget’s theory. With age the cognitive development allows for more complex definitions of participation. Another explanation to the age-related changes in conceptions are that the life circumstance differs depending on age and person (Normandeau et al., 1998; Tinsley, 1992). Adult students and teenagers are exposed to more diverse environmental settings and demands in the school environment than what young children are. Thus, also the conceptions of participation contain more diverse aspects. Other respondent groups than the students, frequently perceived participation differently depending on the age of the student. “Fellowship” was perceived as more important for 10–12-year-olds than for 2–4-year-olds. To have friends was perceived as more important for 10-year-olds than for 2-year-olds. “Conditions and principles for taking part” seemed to be more important when the students were in the age group 5–6 years or 18–20 years. Results suggest that phases such as starting and ending school are important life transitions, which have an impact on perception of life circumstances. In other words, parents, teachers, and special education consultants’ conceptions of participation are more than those of students’ influenced by context and life phase. It indicates that the respondents’ role and responsibility, in relation to the student, affect conceptions of participation. Our results suggest that participation is a dynamic ecological construct. Its conception is dependent on several factors situated on different ecological levels. Thus, Bronfenbrenner’s ecological framework conveniently can be used as a model of description. The feeling of participation is, of course, within the person (Bronfenbrenner, 1999; Sontag, 1996). Feelings of happiness or sadness in relation to “being a part of activities” are created in interactive processes with the environment within the immediate context. These processes develop and are maintained through the individual’s activities in the context. In general, students’ conceptions of participation
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contained feelings and perceptions of the context in the close environment, while parents’, teachers’, and special education consultants’ expanded concept of participation also included indirect environments, such as home– school collaboration or geographical area for the school. The respondents’ closeness to the student, their role and responsibility influence conceptions of participation. As an example, parents’ conceptions of participation are more similar to the students’ conceptions than those of special education consultants’. Dependence on one’s own experiences on conceptions of participation may explain why students did not mention communication. People who are self-determined perceive themselves to be in control; they make or cause things to happen in their lives (Wehmeyer, 1997). Selfdetermination includes both inner characteristics of a person and the actions of that person. Participation and self-determination can therefore be viewed as partly overlapping concepts. The concept of participation is also related to quality of life. According to Wehmeyer and Schalock (2001), there are eight dimensions in quality of life (emotional well-being, interpersonal relations, material well-being, personal development, physical well-being, self-determination, social inclusion, and rights) that somewhat overlap with the themes found in this study, such as characteristics/self-esteem, fellowship, self-determination. Thus, the concept of participation may be seen as a contemporary expression of the normalization principle developed 40 years ago by Nirje (1969) and Wolfensberger (1980). Our results indicate that when providing services to increase a person’s participation, it is important to gain an understanding of that person’s context and life situation, something only gained through sharing his/her life experiences and perceptions of the living environment. The knowledge about personal circumstances of the persons who gave their conceptions about participation in this study is limited. Because closeness and personal knowledge about a student is important in understanding students’ personal experiences of participation, further studies investigating children and students with disabilities conceptions of participation are needed. This study is focused on conceptions of participation based on a snapshot of perceptions at a particular moment of time. How these conceptions evolve and develop over time cannot be studied with this design. In the study, students’ and other respondents’ conceptions of participation were investigated in relation to students’ chronological age and type of disability, with no direct reference to their close environment. Environmental contingencies may interact with individual characteristics to create different conceptions of participation over time. Longitudinal research is needed on how the conceptions of participation of an individual are influenced over time by the present state of the individual and the present environmental conditions.
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