Participação na comunidade de adolescentes e adultos jovens com paralisia cerebral: papel da mobilidade e de fatores contextuais

Abstract

Community participation refers to active involvement in intrinsically social activities that usually take place outside the home. It involves both the individual's access to places within the community and his involvement (i.e., “experience” of participation). Young people with cerebral palsy (CP) have restrictions on community participation, usually associated with limitations in their gross motor function. This factor refers to the individual and does not consider the influence of aspects related to the environment and the individual-environment relationship. Since participation in the community is a relational construct, resulting from the interaction between the individual and the environment, identifying and understanding contextual factors associated with this outcome may guide the actions of health professionals. Additionally, exploring the use of geographic intelligence tools [e.g., Global Positioning System (GPS), Geographic Information System (GIS)] to measure community participation may help advance the study of this construct. The objectives of this thesis were (1) To evaluate the mediating and/or moderating effects of the self-determination of adolescents and young adults with CP and the families’ socioeconomic status (SES) in the relationship between their mobility and participation in the community (Study 1); (2) To analyze how young people with CP understand and experience community participation, as well as understand factors that create opportunities for, or represent barriers to participation in these individuals’ perception (Study 2); and (3) To review studies that used GPS/GIS to investigate the community participation of individuals with different health conditions, and to describe the applicability of this technology in the study of participation (Study 3). Study 1 included 48 young people with CP, aged between 15 and 32 years, classified in levels I–IV of the Gross Motor Function Classification System and able to communicate verbally. Data collection was performed through online platforms, in three days, and involved the documentation of socio-demographic characteristics, the application of the mobility scale of the Pediatric Evaluation of Disability Inventory – Computer Adaptive Test (PEDI-CAT), of the Temple University Community Participation Measure (TUCPM) and of The ARC Self-Determination Scale, in addition to qualitative interviews (Study 2) with a subgroup of Study 1 participants (n=25). The interviews were recorded, transcribed and submitted to content analysis. For Study 3, PRISMA guidelines guided the conduction of a scoping review, in which 36 studies were included and revised. For Study 1, analyses of mediator/moderator effects revealed that the autonomy of young people with CP mediated the relationship between their mobility skills and the variety of community participation. The families' SES moderated the indirect effect of mobility on the variety of community participation through autonomy. When the model was adjusted for participants’ age, individuals with high SES showed a greater breadth of community participation compared to those with moderate and low SES; the magnitude of the differences being greater for those with a reduced repertoire of mobility skills. As for qualitative data (Study 2), eleven categories, with 28 subcategories, emerged from the analysis. The content of the interviews showed that community participation is influenced not only by the mobility and personal characteristics of young people with CP, but also by factors of the physical, social and attitudinal environments in which they live. The scoping review indicated that although GPS/GIS provide information not easily captured by other methods, combining them with other tools (i.e., diaries/questionnaires, qualitative interviews) allows for a more comprehensive description that considers the physical and social dimensions of the community participation.