Dissertação
Percepção de pais sobre o período da adolescência e transição para a vida adulta de seus filhos com paralisia cerebral
Fecha
2020-11-10Autor
Ana Paula Machado Silvério
Institución
Resumen
Parents of individuals with CP are the primary caregivers and providers of support for
their children. During adolescence, caregivers play a key role in health care and involving
their children in daily activities. In recent years, there has been an increase in the body of
knowledge in relation to transition services with actions directed at adolescents with CP,
since they have difficulties during this phase of life. However, these studies report the
importance of services that address the specific needs of parents, in order to assist them
in the challenges experienced during adolescence and the transition to adulthood of their
children with CP. This study aimed to understand how parents of adolescents with CP
experience adolescence and the transition to adulthood for their children and to identify
characteristics for developing a support service for parents of adolescents with CP. A
qualitative study was conducted with 19 families of adolescents with CP of both sexes,
among 12 and 18. Parents were recruited from the Associação Mineira de Reabilitação.
At first, individual interviews with parents were conducted using a semi-structured script.
After the interviews, parents were invited to participate in focus groups. The content of
the interviews and focus groups were recorded and transcribed for content analysis. Three
categories emerged: (1) “The arrival of adolescence” (2) “What will be the future?” (3)
“Support and services: Paths to follow”. The results suggest that adolescence can be a
challenging phase for parents of adolescents with CP, since the behavior changes already
expected by adolescence seem to be intensified by the low participation of adolescents in
social activities and comparison with normal development peers. Parents projected their
desire for their children to become independent in the future. Regarding their future, they
aimed to return the occupational roles that were interrupted with the child's arrival.
Information from the present study guided the design of a program for parents of
adolescents with CP in the transition to adulthood, considering the format, content, and
outcomes to be achieved.