Repertório funcional de crianças com paralisia cerebral : a perspectiva de cuidadores e profissionais

Abstract

The cerebral palsy (CP) due to a non-progressive lesion in the immature brain presents neuromotor impairments and disabilities associated who, allied with contextual factors such as task demands, environmental characteristics and attitudes of family members, can lead to impaired functional performance and the independence of children. Regarding to the actions of family members about the stimuli and expectation relating to children with CP, some studies reported differences between the assessment of family caregiver and the professional responsible for the children treatment and little is known about this difference of perception, being the understanding in the literature concerning aspects related to the way of thinking and acting of family members, still limited. This study aims to verify the agreement between the profile of functionality of children with CP reported by caregivers and rehabilitation professionals in the areas of self-care, mobility, social function and to identify variables related to the caregiver, child and environment that were associated with such agreement. We tested two hypotheses: caregivers and rehabilitation professionals disagree about the typical functional repertoire of the child with CP; and there are variables of the caregiver, child and environment, which may affect the assessment of caregivers in relation to the functional repertoire of his children, who are present when there is disagreement on this score between caregivers and professionals. The study included 50 children with CP aged from 3 to 7.5 years, their primary caregivers of 50 children with CP and 25 rehabilitation professionals, physiotherapists and occupational therapists, linked to six health institutions from the inside the State of São Paulo. The instruments Lipp´s Inventory of Stress Symptoms in Adults (ISSL), Social Support Questionnaire (SSQ), Gross Motor Function Classification System for Cerebral Palsy (GMFCS) and Pediatric Evaluation of Disability Inventory (PEDI) were used, beyond a form identifying the participants. The data were analyzed from the spreadsheets of each instrument and descriptive and inferential statistical analysis, and for the correlation 9 analysis was used nonparametric Spearman test and for the remaining analyzes, the Quisquare, Fisher s Exact, Mann-Whitney test, Kruskal-Wallis and Odds-Ratio. General Strong correlations were found, indicating agreement between the profile of functionality reported by caregivers and professionals, mainly in relation to functional abilities of children and caregivers support needed to the children perform the functional activities, with less agreement on changes of the environment that children use routinely. The relevance of correlations was influenced by factors such as: caregiver's marital status, family income, stress symptoms, professional guidance received regarding the activities of daily living of the child, caregiver time spent with the child and the level motor function of the child. Discusses that part of results does not support one of hypothesis of the research by distancing themselves from notes of literature, which indicate a convergence between the assessments of professional and caregivers, in the environment family and therapeutic, respectively, and a similarity of functional repertoire of children with CP in different contexts investigated, at same time as part of the results confirms the other hypothesis of study, when identifying factors that may explain the level of agreement between caregivers and professionals, configured as variables in this process. It is considered that, the present study may contribute by adding to the knowledge produced in the field, highlighting the influence of variables related to the assessment of caregivers regarding to functionality of the child with CP and interventions of occupational therapists and other professionals to be proposed with children and families in their developmental context.