Article
Actual leisure participation of Norwegian adolescents with Down syndrome Anne-Stine Dolva Lillehammer University College, Norway
Jo Kleiven
Journal of Intellectual Disabilities 2014, Vol. 18(2) 159–175 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629514523158 jid.sagepub.com
Lillehammer University College, Norway
Marit Kollstad Lillehammer University College, Norway Date accepted: 15 January 2014
Abstract This article reports the actual participation in leisure activities by a sample of Norwegian adolescents with Down syndrome aged 14. Representing a first generation to grow up in a relatively inclusive context, they live with their families, attend mainstream schools, and are part of common community life. Leisure information was obtained in individual, structured parent interviews, and added to existing longitudinal data from a project following the sample. Generally, the leisure activity may be viewed as varying along a continuum—reaching from formal, organized, and assisted activity participation outside home, to informal, self-organized, and independent participation at home. Formal leisure activities were either organized ‘‘for all’’ or ‘‘adapted for disabled.’’ The adolescents’ leisure appears as active and social. However, social participation largely involved parents and family, while socializing with other adolescents mainly took place within formal activities adapted for disabled. Clearly, formal and informal activities provide rather different opportunities for social encounters and assistance. Keywords activity, Down syndrome, leisure, participation, social
Corresponding author: Anne-Stine Dolva, Faculty of Education and Social Work, PO Box 952, N-2904 Lillehammer, Norway. Email: [email protected]
160
Journal of Intellectual Disabilities 18(2)
Introduction In Norway, where the present study is conducted, today’s generation of adolescents with intellectual disability has grown up in an inclusive context. After the majority of institutions were closed 20 years ago, children with an intellectual disability grow up in their own families and belong to the mainstream of school and community life. However, a few special schools still exist in some urban areas. Under an inclusive national policy, equal living rights and opportunities are available to all, including participation in leisure. Consequently, legislation has also established a right to a leisure companion assistant for individuals with a disability. This service is administered by the Municipal Health and Care offices, with the intention of providing opportunities for active leisure for all. Even after more than 20 years of this inclusive policy, however, a recent Norwegian report describes the leisure of people with intellectual disability as limited, and the use of assistants has declined over the last years (Søderstrøm and Tøssebro, 2011). To gain improved insight into this development and to facilitate leisure participation, more detailed descriptions of the current situation are needed. Hence, the present study has three research questions: (1) Which leisure activities are actually utilized by Norwegian adolescents with intellectual disability like Down syndrome (DS)? (2) What characterizes this participation? (3) What are the main influences on the participation? Leisure has been studied by social scientists for quite some time (Chubb and Chubb, 1981; Kelly, 1990). Leisure is important to people, and leisure activities undoubtedly provide important benefits (Driver et al., 1991). Moreover, research on ‘‘serious leisure’’ has shown that it fills real and desirable functions in society as well as for individuals (Stebbins, 1992, 2006). Thus, leisure may provide chances of developing valuable friendships, social contacts, and networks as well as desirable growth, learning, and mastering experiences. The concept of leisure is focusing on activities that may be freely chosen. For children and adolescents, these mainly occur in their time outside school (Desha and Ziviani, 2007). Intrinsic a motivation and opportunity to freely choose an activity have been described as promoters of leisure participation (Brown et al., 2011; Fitzgerald et al., 1995; Larson and Verma, 1999). Participation is one of the key concepts in the International Classification of Functioning, Disability and Health (ICF, WHO, 2001) and includes both an activity and a participation component. In the ICF, activity is defined as the execution of a task or action by an individual. Participation is defined as ‘‘involvement in life situations’’ (2001: 213). Thus, leisure participation is a multidimensional concept, acknowledging an interactive relationship between person and environment, with both subjective and objective components. DS is the most common single cause of intellectual disability, affecting approximately 1 out of 700–900 children born (Roizen and Patterson, 2003). Adolescents with DS have been found to participate in significantly fewer leisure activities than their peers without a disability (Solish et al., 2010). Their leisure activities are often described as sedentary and solitary; involving few or no friends (Buttimer and Tierney, 2005; Cuckle and Wilson, 2002; D’Haem, 2008; Oates et al., 2011). Level of cognition and motor function has been found to influence the leisure participation and enjoyment of individuals with DS (Wuang and Su, 2012). Also general functional independence seems to correlate with participation in sports activities and number of friends (Oates et al., 2011). A brief review of research indicates that participation in leisure activities is more closely related to environmental factors than personal characteristics, with environmental factors serving as facilitators or barriers (Badia et al., 2011). Being educated in mainstream schools is found to
Dolva et al.
161
facilitate leisure participation in social activities as it influences activity interests and preferences (Badia et al., 2011, 2013). Also family plays a vital part in the leisure of young people with DS. The opportunities created by families or the extended family are crucial to activity participation (Cuckle and Wilson, 2002; Sloper et al., 1990). Parents who engage in activities themselves tend to promote or encourage similar participation for their children with disabilities (Murphy and Carbone, 2008). Also more generally, the leisure time priorities of the family are found to influence adolescents’ leisure participation (King et al., 2006; Mactavish and Schleien, 2000). When participation depends on others, such as parents, their perception of being short of time is described as a barrier. Likewise, support persons are found to play an essential role, both as facilitators and as barriers (Mahy et al., 2010). When involving others, successful social participation has been characterized as being able to achieve in activities that are valued by other adolescents (Fox et al., 2004; Heah et al., 2007). Thus, activities also constitute a basis for social interaction between individuals with and without DS (Dolva et al., 2010). Like other adolescents, young people with DS are influenced by the values and norms of the society where they belong—including the dos and don’ts related to leisure behavior. Despite some general knowledge, little is known about the actual leisure participation among adolescents with DS. For example, are individual differences important, and what opportunities may be identified? The present Norwegian situation may provide a unique opportunity for studying such central questions. The aim of this study, then, was to describe the actual leisure activities of Norwegian adolescents with DS and to explore the influences on this participation.
Method Sample and informants A longitudinal study is following individuals with DS (n ¼ 43, 70% of the yearly population) in Norway during their life span from the age of 5 years (cf. Dolva et al., 2004). At the time of the present data collection, the adolescents were 14 years of age. For different reasons, five could not participate. Consequently, the question of selective dropout and biased sample needs to be addressed. Comparisons were therefore made between the five and the remaining sample. Here, data on function performance obtained at the samples’ age of 7 (Dolva et al., 2007) with the Pediatric Evaluation of Disability Inventory (PEDI) (Haley et al., 1992) were used, since more recent data from the complete original sample do not exist. According to the original PEDI norms, a lower function level was found with the dropouts in the domain of selfcare (t ¼ 3.873; degrees of freedom (df) ¼ 37; p < 0.001). No significant difference was observed for the mobility and social function domains. Also, as will be shown in results’ section, the present study shows no relationships between function scores and leisure participation. Minor differences between the dropouts and the remaining sample are therefore not likely to threaten the representativeness of the study. Hence, we view the remaining sample as adequate for our purposes. The present sample, then, includes 38 individuals, that is, 62% of the original population. Our informants were 34 mothers and 4 fathers. Most parents (71%) were married or cohabitants and 29% were single parents. About half of the parents (53%) had >13 years of education.
162
Journal of Intellectual Disabilities 18(2)
Sample characteristics The adolescents (n ¼ 38) included in this study constitute 62% of the 14-year-old population with DS in Norway. The sample was equally divided among boys and girls. The Trisomy 21 type of DS was most common (92%), but mosaic and translocation types were also represented. One-third had additional diagnoses such as autism, attention-deficit hyperactivity disorder, diabetes, asthma, or others. About half of the adolescents had visual impairments and 25% had various hearing difficulties. About one-half of the sample (55%) had some kind of congenital heart defect, which generally had been corrected in infancy. All adolescents primarily lived with their family. One half (50%) dwelled in rural districts with
Actual leisure participation of Norwegian adolescents with Down syndrome Anne-Stine Dolva Lillehammer University College, Norway
Jo Kleiven
Journal of Intellectual Disabilities 2014, Vol. 18(2) 159–175 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629514523158 jid.sagepub.com
Lillehammer University College, Norway
Marit Kollstad Lillehammer University College, Norway Date accepted: 15 January 2014
Abstract This article reports the actual participation in leisure activities by a sample of Norwegian adolescents with Down syndrome aged 14. Representing a first generation to grow up in a relatively inclusive context, they live with their families, attend mainstream schools, and are part of common community life. Leisure information was obtained in individual, structured parent interviews, and added to existing longitudinal data from a project following the sample. Generally, the leisure activity may be viewed as varying along a continuum—reaching from formal, organized, and assisted activity participation outside home, to informal, self-organized, and independent participation at home. Formal leisure activities were either organized ‘‘for all’’ or ‘‘adapted for disabled.’’ The adolescents’ leisure appears as active and social. However, social participation largely involved parents and family, while socializing with other adolescents mainly took place within formal activities adapted for disabled. Clearly, formal and informal activities provide rather different opportunities for social encounters and assistance. Keywords activity, Down syndrome, leisure, participation, social
Corresponding author: Anne-Stine Dolva, Faculty of Education and Social Work, PO Box 952, N-2904 Lillehammer, Norway. Email: [email protected]
160
Journal of Intellectual Disabilities 18(2)
Introduction In Norway, where the present study is conducted, today’s generation of adolescents with intellectual disability has grown up in an inclusive context. After the majority of institutions were closed 20 years ago, children with an intellectual disability grow up in their own families and belong to the mainstream of school and community life. However, a few special schools still exist in some urban areas. Under an inclusive national policy, equal living rights and opportunities are available to all, including participation in leisure. Consequently, legislation has also established a right to a leisure companion assistant for individuals with a disability. This service is administered by the Municipal Health and Care offices, with the intention of providing opportunities for active leisure for all. Even after more than 20 years of this inclusive policy, however, a recent Norwegian report describes the leisure of people with intellectual disability as limited, and the use of assistants has declined over the last years (Søderstrøm and Tøssebro, 2011). To gain improved insight into this development and to facilitate leisure participation, more detailed descriptions of the current situation are needed. Hence, the present study has three research questions: (1) Which leisure activities are actually utilized by Norwegian adolescents with intellectual disability like Down syndrome (DS)? (2) What characterizes this participation? (3) What are the main influences on the participation? Leisure has been studied by social scientists for quite some time (Chubb and Chubb, 1981; Kelly, 1990). Leisure is important to people, and leisure activities undoubtedly provide important benefits (Driver et al., 1991). Moreover, research on ‘‘serious leisure’’ has shown that it fills real and desirable functions in society as well as for individuals (Stebbins, 1992, 2006). Thus, leisure may provide chances of developing valuable friendships, social contacts, and networks as well as desirable growth, learning, and mastering experiences. The concept of leisure is focusing on activities that may be freely chosen. For children and adolescents, these mainly occur in their time outside school (Desha and Ziviani, 2007). Intrinsic a motivation and opportunity to freely choose an activity have been described as promoters of leisure participation (Brown et al., 2011; Fitzgerald et al., 1995; Larson and Verma, 1999). Participation is one of the key concepts in the International Classification of Functioning, Disability and Health (ICF, WHO, 2001) and includes both an activity and a participation component. In the ICF, activity is defined as the execution of a task or action by an individual. Participation is defined as ‘‘involvement in life situations’’ (2001: 213). Thus, leisure participation is a multidimensional concept, acknowledging an interactive relationship between person and environment, with both subjective and objective components. DS is the most common single cause of intellectual disability, affecting approximately 1 out of 700–900 children born (Roizen and Patterson, 2003). Adolescents with DS have been found to participate in significantly fewer leisure activities than their peers without a disability (Solish et al., 2010). Their leisure activities are often described as sedentary and solitary; involving few or no friends (Buttimer and Tierney, 2005; Cuckle and Wilson, 2002; D’Haem, 2008; Oates et al., 2011). Level of cognition and motor function has been found to influence the leisure participation and enjoyment of individuals with DS (Wuang and Su, 2012). Also general functional independence seems to correlate with participation in sports activities and number of friends (Oates et al., 2011). A brief review of research indicates that participation in leisure activities is more closely related to environmental factors than personal characteristics, with environmental factors serving as facilitators or barriers (Badia et al., 2011). Being educated in mainstream schools is found to
Dolva et al.
161
facilitate leisure participation in social activities as it influences activity interests and preferences (Badia et al., 2011, 2013). Also family plays a vital part in the leisure of young people with DS. The opportunities created by families or the extended family are crucial to activity participation (Cuckle and Wilson, 2002; Sloper et al., 1990). Parents who engage in activities themselves tend to promote or encourage similar participation for their children with disabilities (Murphy and Carbone, 2008). Also more generally, the leisure time priorities of the family are found to influence adolescents’ leisure participation (King et al., 2006; Mactavish and Schleien, 2000). When participation depends on others, such as parents, their perception of being short of time is described as a barrier. Likewise, support persons are found to play an essential role, both as facilitators and as barriers (Mahy et al., 2010). When involving others, successful social participation has been characterized as being able to achieve in activities that are valued by other adolescents (Fox et al., 2004; Heah et al., 2007). Thus, activities also constitute a basis for social interaction between individuals with and without DS (Dolva et al., 2010). Like other adolescents, young people with DS are influenced by the values and norms of the society where they belong—including the dos and don’ts related to leisure behavior. Despite some general knowledge, little is known about the actual leisure participation among adolescents with DS. For example, are individual differences important, and what opportunities may be identified? The present Norwegian situation may provide a unique opportunity for studying such central questions. The aim of this study, then, was to describe the actual leisure activities of Norwegian adolescents with DS and to explore the influences on this participation.
Method Sample and informants A longitudinal study is following individuals with DS (n ¼ 43, 70% of the yearly population) in Norway during their life span from the age of 5 years (cf. Dolva et al., 2004). At the time of the present data collection, the adolescents were 14 years of age. For different reasons, five could not participate. Consequently, the question of selective dropout and biased sample needs to be addressed. Comparisons were therefore made between the five and the remaining sample. Here, data on function performance obtained at the samples’ age of 7 (Dolva et al., 2007) with the Pediatric Evaluation of Disability Inventory (PEDI) (Haley et al., 1992) were used, since more recent data from the complete original sample do not exist. According to the original PEDI norms, a lower function level was found with the dropouts in the domain of selfcare (t ¼ 3.873; degrees of freedom (df) ¼ 37; p < 0.001). No significant difference was observed for the mobility and social function domains. Also, as will be shown in results’ section, the present study shows no relationships between function scores and leisure participation. Minor differences between the dropouts and the remaining sample are therefore not likely to threaten the representativeness of the study. Hence, we view the remaining sample as adequate for our purposes. The present sample, then, includes 38 individuals, that is, 62% of the original population. Our informants were 34 mothers and 4 fathers. Most parents (71%) were married or cohabitants and 29% were single parents. About half of the parents (53%) had >13 years of education.
162
Journal of Intellectual Disabilities 18(2)
Sample characteristics The adolescents (n ¼ 38) included in this study constitute 62% of the 14-year-old population with DS in Norway. The sample was equally divided among boys and girls. The Trisomy 21 type of DS was most common (92%), but mosaic and translocation types were also represented. One-third had additional diagnoses such as autism, attention-deficit hyperactivity disorder, diabetes, asthma, or others. About half of the adolescents had visual impairments and 25% had various hearing difficulties. About one-half of the sample (55%) had some kind of congenital heart defect, which generally had been corrected in infancy. All adolescents primarily lived with their family. One half (50%) dwelled in rural districts with
