Belgrade: Institute of Criminological and Sociological Research, 2020.
Cerebral palsy is a well-recognized, heterogeneous condition persisting through the lifespan. In many individuals with cerebral palsy, motor disorders are associated by other comorbidities, including disturbances of sensation, perception, cognition and communication, epilepsy, emotional, behavioural and secondary musculoskeletal problems. Children with cerebral palsy face various challenges that can manifest in different ways over the life course, such as reduced and less diverse participation in daily activities at home, school and in the community, when compared to peers.In the International Classification of Functioning, Disability, and Health (ICF), participation is defined as a person’s “involvement in life situations”, reflecting the interaction of the person, activity and environment. However, little is known on the participation of children with disabilities in developing countries with fewer resources, such as Serbia.
This study aimed to examine the characteristics of community participation of children with cerebral palsy in comparison to their peers with typical development and the effect of the environment on this participation, from the perspective of parents.
The results of our study confirmed that the overall participation of children with cerebral palsy in the community was lower in comparison to the participation of children with typical development. Children with cerebral palsy participated in fewer activities, less frequently and were involved to a lesser extent. Differences were also evident at the level of individual activity types.
Higher frequency, greater involvement level and a broader variety of activities were the desired types of change, as reported by parents. Parents of children with cerebral palsy highlighted engaging in activities that were beneficial for functional, motor and health status of the child, that were involving social interaction and communication and those providing children with the opportunities to develop social skills.
By comparing the structures of environmental factors, the results of our study indicated more barriers and fewer facilitators in the group of children with cerebral palsy. Additionally, the environment was overall less supportive, environmental factors were rated less often as helpful in the child’s participation, and community resources were less available and/or adequate. For most children with cerebral palsy, barriers included physical and cognitive demands of typical community-based activities, as well as the physical layout of community settings. On the other hand, the supports included attitudes and actions of other members of the community towards the child, relationships with peers and social demands of typical activities. A lack of more adequate services was confirmed.
Functional limitations children with cerebral palsy (gross motor, fine manual and intellectual functioning) were associated with the lower involvement in community-based activities. Activities affected by functional limitations were unstructured and organized physical activities, getting together with other children, and to a lesser extent, community events, neighbourhood outings, overnight visits or trips and extracurricular classes and lessons. Children with cerebral palsy with more severe levels of intellectual disability were at increased risk of fewer supporting factors and collectively less support and help from the environment.
New findings may aid the identification of families with a child with cerebral palsy who may need interventions to improve children's participation in the community environment.
KEY WORDS: participation, disability studies, International Classification of Functioning, Disability and Health, disability, children with cerebral palsy, involvement, barriers, environment, community-based activities
Suggested Citation: Milićević, M. (2020). Community participation of children with cerebral palsy in Serbia: Conceptual considerations and evaluation. Institute of Criminological and Sociological Research. https://doi.org/10.47152/127442