Community participation of children with cerebral palsy in Serbia: conceptual considerations and evaluation

Milićević, Milena (2020) Community participation of children with cerebral palsy in Serbia: conceptual considerations and evaluation. Institute of criminological and sociological research, Belgrade. ISBN 978-86-80756-35-6

Text Milena Milicevic. Community Participation of Children with Cerebral Palsy in Serbia.pdf - Published Version Available under License Creative Commons Attribution Non-commercial No Derivatives. Download (1MB)

Abstract

Participation was introduced as a concept in 2001 when the World Health Organization (WHO) published the International Classification of Functioning, Disability and Health – ICF (WHO, 2001). Since then, as a significant aspect of overall human functioning, participation has become the subject of the growing interest of the professional and scientific public. Defined as a person’s “involvement in life situations”, participation is a central part of a child's development, but also the basis of the experienced quality of life at all ages (Imms, 2020; Imms et al., 2008; Kang et al., 2014; King et al., 2003; Mc Manus et al., 2008; Orlin et al., 2010). Besides, it plays a key role in developing children's ability to acquire new skills and to develop meaningful relationships with others, to communicate. Regarding school activities, it is considered essential for learning and relevant in educational and social terms (Law, 2002; Simeonsson et al., 2001). Also, participation provides opportunities to gain life experience, social skills and competencies, to connect with other people and achieve social connections, with a positive impact on life satisfaction, sense of ability, health and mental and emotional well-being (Bart & Rosenberg, 2011; Engel-Yeger et al., 2009; Hammel et al., 2008; Law, 2002; Law et al., 2003). The nature and extent of participation are defined by the interaction between the person and the dimensions of the environment (Imms, 2020; Simeonsson et al., 2001). The role of participation, including the social one, is notable in a central premise of the shift from a medical to a social model of disability (Simeonsson et al., 2001). Participation can also be influenced by culture, especially in a community environment. This influence is mediated by the social environment and family routines as basic aspects of culture. Thus, differences between cultures are visible through attitudes toward children and expectations when it comes to skills that are developed and behaviours that are encouraged in children (Engel-Yeger et al., 2007). Cerebral palsy is the most common cause of childhood motor disability (Pakula et al., 2009; Rosenbaum, 2003), accounting for over 60% of severe motor disabilities (Cans, 2003). Cerebral palsy is complex and characterized by wide variations in motor functioning, followed by limitations in sensation, perception, cognition, communication, behaviour and other health conditions, such as epilepsy and secondary musculoskeletal problems (Rosenbaum et al., 2007). As one of the most common etiological factors of motor behaviour disorders, cerebral palsy limits the development of abilities with all the consequences that accompany, limit or disable motor, cognitive, intellectual, emotional and social functioning of these persons, leading to a constant need for intensive and continuous support (Milićević et al., 2011). By comparing the cumulative data of relevant functional domains in subjects with cerebral palsy (Body functions and structures, Activities and participation, Environmental factors, all according to ICF Checklist 2.1a), it was confirmed that numerous physical impairments and disorders interfere with the functioning of these individuals in the environment (Nedović et al., 2012). Although participation in recreation and community life improves before age 23 years for those in GMFCS levels III and IV, long-term course of overall participation in the mid- and late 20s for individuals with cerebral palsy shows increase of difficulties, particularly in domestic life, education and employment (van Gorp, Van Wely, et al., 2019). Overall, the environment, attitudes, and barriers are additional factors that limit the functioning, activities, and participation of children with cerebral palsy. Thus, the life of persons with cerebral palsy is accompanied by a high risk for the development of secondary conditions that compromise functional abilities, daily life activities, as well as participation, and negatively affect the quality of life (Svien et al., 2008). Given that this is a heterogeneous group of disorders and that the clinical picture includes a wide range of impairments and comorbidities (Rosenbaum et al., 2007), the question is whether the consequences of this condition can be seen in the involvement of children from this population in different life situations and to what extent participation is reduced. If individuals are not given the opportunity to participate in a range of different activities, then they are actually denied the opportunity to fulfil their potential as active participants in life at home, in the family, and the community (King et al., 2003). Starting from equality and guaranteed human rights, it is important to understand the relationship, differences, but also the similarities of the participation of children with disabilities or children with typical development, i.e. children from the general population. In addition, determining the characteristics of participation in a particular environment is the first step in developing strategies and planning interventions in the field of special education and rehabilitation. If the focus of special education and rehabilitation of persons with motor disorders or physical disabilities is on improving their overall well-being, then, as a priority, strengthening and improving their involvement in life situations should be set. However, it is necessary to empower them to participate in activities that are meaningful to them and in which their needs and desires are respected, to include them in everyday life with others and to provide a sense of fulfilment. Participation is paramount for children with cerebral palsy, as a primary goal and an entry point of rehabilitation services and an outcome desired by parents (Arakelyan et al., 2019; Bedell et al., 2011, 2013; Coster & Khetani, 2008; Palisano et al., 2012). Improving and optimizing the participation of children with developmental disabilities and chronic diseases, including cerebral palsy, in different settings is one of the key goals of special education and rehabilitation, as well. Risk factors and possible modifiable factors differ between the participation domains across settings, implying the need for individualised goal setting to optimize participation (van Gorp, E. Roebroeck, et al., 2019). A majority of research on the participation of children with disabilities across different settings has been focused on school-age children from six years and above and conducted in developed countries with adequate resources (Raghavendra, 2013). Therefore, less is known on the participation of children with disabilities in developing countries with fewer resources (Schlebusch et al., 2020). In Serbia, children with intellectual disability and children with autistic spectrum disorders participate in fewer social, leisure and recreational activities compared to their typically developing peers (Kaljača et al., 2018). Activities in which they participated are described as stereotypical and highly structured. A significantly smaller number of children with intellectual disability and autistic spectrum disorders were able to participate independently in social activities, as well. Another research indicated that a lack of programs and services for children cerebral palsy was perceived as a barrier more frequently and with stronger influence in suburban communities compared to urban and rural ones (Milićević & Nedović, 2017b). Overall, participation is inadequately represented in the planning and evaluation of services in rehabilitation (Dimitrijević, 2014; Milićević & Nedović, 2017a, 2020). Besides, referring to the fact that participation is determined partly by socio-cultural factors and the value system, we believe that it is justified to explore the characteristics of participation of children with cerebral palsy and the structure of environmental factors in Serbia. Participation in community-based activities is not an exception. New findings may aid the identification of families with a child with cerebral palsy who might require interventions to improve their participation in this setting. The empirical basis of this research is designed to contribute to a better understanding of participation in different environments, as well as to a better understanding of the problems and challenges that children with cerebral palsy and their families face every day, by describing the specifics of participation characteristics and highlighting important factors. The findings could contribute to a new insight into the specific environmental conditions under which influence the participation of children from this population varies. Thus, the new knowledge gained by examining the achieved participation would provide insight into the changes that need to be made in a comprehensive approach to children with cerebral palsy and participation-based therapy. Finally, by considering the possibilities of promoting the participation of a child with cerebral palsy, guidelines could be given in selecting and planning evidence-based interventions that promote a supportive environment and encourage their active involvement.

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