Percepção dos adolescentes com paralisia cerebral e de seus cuidadores acerca da construção de independência em tarefas de autocuidado e domésticas

Abstract

Adolescents with cerebral palsy (CP) are less involved in self-care and household chores. The reasons for limitations in these tasks are related to motor, cognitive and psychosocial issues difficulties, as well as contextual barriers. The relationship among adolescents and their caregivers may be a crucial element in the development of the independence in daily living tasks.. The main objective of the study was to understand how the building process of independence of adolescents with CP occurs in self-care and household tasks, from the perspective of adolescents and their caregivers. A qualitative study with a phenomenological approach was carried out. Ten adolescents aged between 15 and 17 years, and eleven caregivers participated in the study. Participants were purposefully recruited from the “Projeto Adolescência em Foco” at Associação Mineira de Reabilitação and other rehabilitation centers in Minas Gerais. Semi-structured interviews were conducted individually and virtually with each participant. Images of self-care and household chores were presented to participants to trigger reflection and discussion. The content of the interviews was recorded and transcribed. Two thematic categories emerged after analyzing the material: (1) “Now do we have to think about independence?”; (2) “Possible pathways for promoting independence.” Three subcategories emerged from the first category: “Expectations and desire to be independent”; “Reasons for dependence”; “Consequences in the future.” The second category was divided into four subcategories: “People and places”; "Practice"; "Personal characteristics"; “What about when complete independence is not possible?” The information from the study indicates that experiencing adolescence increased by a physical disability has consequences for both adolescents and their caregivers, during the process of building independence. To facilitate this process, there is a need to provide adolescents and their caregivers with opportunities for practice, time, repetition, modeling, adaptations, guidance, support from friends and family, development of self-determination, and support from rehabilitation services.