Building independence in self-care and household tasks: a qualitative study with adolescents with cerebral palsy and their caregivers.

ABSTRACT

PURPOSE: Adolescents with cerebral palsy (CP) may experience limitations in self-care and household tasks. The aim of the study was to understand the process of building independence in self-care and household tasks from the perspective of adolescents and their caregivers. MATERIALS AND METHODS: We conducted a qualitative study with a phenomenological approach with 10 adolescents (15-17 years old) and 11 caregivers from a transition service in Brazil. Semistructured, remote interviews were conducted with each participant. The interviews were recorded for transcription and content analysis. RESULTS: Two thematic categories emerged (1) "Thinking about independence" and (2) "Possible ways to foster independence." The first category was divided into three subcategories "Expectations and the desire to be independent," "Obstacles to independence," "Concerns about the future." The second category was divided into four subcategories "People and places," "Opportunities for practice," "Personal attitude" and "Adaptations that facilitate." CONCLUSION: Adolescents' independence in several everyday activities involves physical, socioemotional and environmental aspects. Enabling opportunities for practice, an adapted environment, support from rehabilitation services and developing collaborative relationships with caregivers are elements that may favor the independence of adolescents with CP.

The relationship between adolescents and their caregivers is important in building independence.Interventions centered on educational practices for caregivers of adolescents with cerebral palsy should be encouraged.Environmental facilitators include support from families, friends and therapists.Collaborations among therapists, caregivers and adolescents may promote autonomy.