RESUMO
PURPOSE: Although discrimination has gained increasing attention in research and practice intervention for family caregivers of children with disabilities, little is known about the social determinants that associate with the perceived discrimination among caregivers, especially in non-Western contexts. This study aims to examine the socio-familial and child-level determinants of perceived discrimination among family caregivers of children with disabilities in China. METHOD: This study drew from a population-based cross-sectional survey in Shenzhen, China. Proportional quota sampling was conducted to get data from 2500 family caregivers of children with disabilities in rehabilitation service centers (response rate = 94.9%, n = 2373), accounting for 25% of the total population of children with disabilities receiving service in Shenzhen. Latent profile analysis was conducted to categorize three perceived discrimination groups among caregivers (i.e., severe perceived discrimination group, moderate perceived discrimination group, and low perceived discrimination group). The multinomial logistic regression models were conducted to test the association between these social determinants and perceived discrimination. RESULTS: Most caregivers (82.9%) reported moderate or severe levels of perceived discrimination. Caregivers of children with moderate and severe impairments and children with mental and multiple disabilities were more vulnerable to perceiving severe social discrimination. Socio-familial characteristics, particularly the intersectionality between gender and employment, influence caregivers' perceived discrimination. CONCLUSION: Caregivers of children with disabilities experience pervasive social discrimination in contemporary urban China. Our study demonstrates that the social construction of disablism and the affiliate discrimination against family caregivers of children with disabilities is complex and multidimensional and depends upon the children's disability and the caregivers' socio-demographic characteristics.
Assuntos
Cuidadores , Crianças com Deficiência , Discriminação Social , Humanos , China , Masculino , Feminino , Estudos Transversais , Crianças com Deficiência/psicologia , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Criança , Adulto , Discriminação Social/psicologia , Pessoa de Meia-Idade , Adolescente , Determinantes Sociais da Saúde , Pré-Escolar , Fatores Socioeconômicos , Percepção , Inquéritos e QuestionáriosRESUMO
LAY ABSTRACT: Timely detection is an issue of paramount importance in the care of children with autism spectrum disorder. Whether the delayed autism spectrum disorder diagnosis can be explained by children's clinical presentations and socio-familial status in China is a question to be addressed. We investigated 1235 autism spectrum disorder children from 132 rehabilitation organisations in Shenzhen, China. These children were found to have a mean age of diagnosis of 31.4 ± 12.7 months and a median age of diagnosis of 30.0 months. The majority of these children were able to receive their diagnosis during toddlerhood. However, about one in six were not diagnosed until they entered preschool or later, thus missing the golden window of opportunity for early intervention. The age of diagnosis was likely to be late if the children were older, were less severe and presented with no intellectual impairment. The odds of having a delayed autism spectrum disorder diagnosis were more than 9 times higher among migrant autism spectrum disorder children than among those with local household registrations, thus underscoring the importance of identifying culturally sensitive socio-economic determinants in autism spectrum disorder detection, as these factors are likely to affect the quality of life of many autism spectrum disorder children and their families.