Social participation: the perspectives of adolescents with cerebral palsy and their mothers

• Published in: International journal of developmental disabilities 2021, Vol.67 (4), p.263-272
• Main Authors: Lopes, Priscila Bianchi, Shikako-Thomas, Keiko, Cardoso, Roberta, Simões Matsukura, Thelma
• Format: Article
• Language: English
• Subjects: Adolescents; Attitudes; Autonomy; Barriers; Cerebral Palsy; Concerts; developmental disabilities; family; Foreign Countries; Friendship; Health care; Interpersonal Relationship; Interviews; Mothers; Original; Parent Attitudes; parenting; Parenting Styles; Parents & parenting; Participation; Personal Autonomy; Restaurants; Social activities; Social Life; Social participation; Teenagers
• ISSN: 2047-3869; 2047-3877
• DOI: 10.1080/20473869.2019.1623596

Social participation is a complex construct, thus different factors may facilitate or restrict engagement. Adolescents with Cerebral Palsy (CP) and their mothers often experience barriers in social participation. Therefore, they are frequently facing challenges in order to engage in meaningful activities, in different contexts. We aimed at exploring the perspectives of mothers and adolescents with CP on their social participation. This is a cross-sectional and exploratory study, with a qualitative design. Seven adolescents with CP, aged from 11 to17 years old and their mothers, participated in a semi-structured interview, in São Paulo, Brazil. Data from interviews were analyzed with the Collective Subject Discourse (CSD) technique. Mothers believed that their parenting practices contribute to the social participation of their children. Mothers revealed concerns about how to support the autonomy of their children and how to help them to establish meaningful and mature relationships. Adolescents with CP reported to engage in a range of social activities, with friends in different contexts, such as restaurants, cinema, concerts, parks and school. They also reported to appreciate social participation and to look for strategies in order to engage. This work can contribute to the understanding of social participation of adolescents with CP, under the perspective of these people and their mothers by allowing them to express their thoughts and voice their fears and limitations. Healthcare providers should adopt a lifespan approach to disabilities and recognize the unique challenges of adolescence in the life of both child and parents.