Vigilância do quadril de crianças e adolescentes brasileiros com paralisia cerebral: um estudo quanti-qualitativo sobre o conhecimento dos pais

Abstract

Children with Cerebral Palsy (CP) are more likely to develop progressive hip dislocation. Hip surveillance, which is the process of monitoring and identifying critical early characteristics of hip dislocation, is recommended when monitoring these children. Understanding parents’ experiences when engaging in hip surveillance may allow for a better, family-centered approach to implementing this program in Brazil. The aim of this study was to assess the knowledge of caregivers regarding hip surveillance and the prevalence of hip dislocation in Brazilian children and adolescents with Cerebral Palsy. This is a cross-sectional, mixed study design in which caregivers of children and adolescents with CP from all over Brazil up to 18 years of age were invited to participate. All individuals who responded to the contact between April 2023 and November 2024 participated in this study, which was divided into two stages: the first was the application of an online questionnaire with closed-ended questions about contextual factors; and the second, with a new invitation to caregivers to participate in an interview about hip monitoring via the Google Meet application through focus groups. A total of 308 caregivers of children and adolescents with CP participated. Of these, 47.7% were between 2 and 6 years old, 61.4% had spastic CP and 27.6% were classified as GMFCS level V. 89.6% of those responsible were mothers, 66.9% had up to high school education, and 69.5% used the Public Health system. Regarding the hip, 21.3% of caregivers were aware of their children's hip dislocation, 28.3% of children/adolescents had hip pain, 22.9% had limitations in ADLs, and 68.4% of parents/caregivers said they had knowledge about hip monitoring. The GMFCS levels were correlated and weakly associated with limitations in ADLs (rhô=-0.176; p=0.002; X2=11.454; p=0.043), there were weak correlations between the presence of pain and limitations in ADLs (rhô=0.136; p=0.017), presence of hip displacement and limitations in ADLs (rhô=0.334; p<0.001) and presence of hip displacement and presence of hip pain (rhô=0.428; p<0.001). Also, there were associations between the use of assistive devices and the GMFCS level (X2=44.557; p=0.042) and between the presence of hip displacement in children older than 6 years (X2=16.448; p<0.001). In the interview, the caregivers expressed overprotection and curiosity about hip monitoring, as well as coping as a defensive attitude, to achieve better treatments and follow-up for their children. Despite the knowledge of caregivers about the importance of hip monitoring, this knowledge is limited and practically 1 in 5 of them are aware that their child's hip is dislocated. Pain, limitations in ADLsand age (transition to adolescence and adulthood) should be taken into consideration when evaluating children/adolescents with CP.