The Development of Autonomy in Young Patients with Spina Bifida ‐ what the youngsters and their parents/careers say
Supporting Agencies
- Instituto Nacional para a Reabilitação
Abstract
The Spina Bifida (SB) is a congenital malformation of the spinal cord, according to the level of spinal cord injury, these children present limitations of the orthopedic, urological, motor and sensory forum, hindering the acquisition of skills needed to perform their activities of daily living.This situation is extended during childhood and compromises the development of the autonomy of these young people as an essential step for its development.
The aim of this study is to know the opinion of young people with SB and their parents / caregivers, about the process of autonomy and the factors that are indicated as favorable and unfavorable to this process.
Based on the analysis of two Focus Group interviews, to seven youth with SB and their parents / caregivers, the following categories emerged: construction of autonomy in general, hygiene, mobility and elimination.
The results revealed that being autonomous means being independent and young people see this aspect as leverage in their self-esteem. The factors that relate hinder the construction of autonomy is connected to the environment: the architectural barriers, the lack of hygiene and accessibility of toilets; the parental overprotection, the lack of motivation and the feeling of revulsion against its body. As facilitating factors: accessibility of the environment, upgraded bathrooms, operational strategies and the existence of support system and a reference model. We believe that this study may be the first step to allow an appropriate intervention of the nurses resulting in an improvement of the quality of life of this youth.
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