Lopes Priscila Bianchi, Shikako-Thomas Keiko, Cardoso Roberta, Simões Matsukura Thelma
Federal University of São Carlos, São Carlos, São Paulo, Brazil.
School of Physical and Occupational Therapy, McGill University, Researcher, CRIR/Centre de réadaptation MAB-Mackay, Montreal, QC, Canada.
Int J Dev Disabil. 2019 Jul 31;67(4):263-272. doi: 10.1080/20473869.2019.1623596. eCollection 2021.
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.
社会参与是一个复杂的概念,因此不同因素可能促进或限制参与度。患有脑瘫(CP)的青少年及其母亲在社会参与方面常常面临障碍。因此,他们在不同环境中参与有意义的活动时经常面临挑战。
我们旨在探讨患有CP的青少年及其母亲对社会参与的看法。
这是一项采用定性设计的横断面探索性研究。七名年龄在11至17岁之间患有CP的青少年及其母亲在巴西圣保罗参加了半结构化访谈。访谈数据采用集体主体话语(CSD)技术进行分析。
母亲们认为她们的育儿方式有助于孩子的社会参与。母亲们表达了对如何支持孩子的自主性以及如何帮助他们建立有意义和成熟关系的担忧。患有CP的青少年报告称在不同环境中与朋友参与了一系列社会活动,如餐厅、电影院、音乐会、公园和学校。他们还表示重视社会参与并寻求参与的策略。
这项工作有助于从这些人和他们母亲的角度理解患有CP的青少年的社会参与情况,让他们能够表达自己的想法、说出自己的恐惧和局限。医疗保健提供者应采取全生命周期的残疾观,认识到青少年时期对孩子和父母生活的独特挑战。