Caring for children with autism spectrum disorder and the relationship with the social determinants of health from the perspective of caregivers

Abstract

Purpose: To verify the possible relationship between the children with Autism Spectrum Disorder caregiver´s burden with the Social Determinants of Health. Methods: Descriptive exploratory qualitative study carried out with caregiver´s of children up to 12 years old who have the Autism Spectrum Disorder diagnosis and were undergoing treatment in a Specialized Rehabilitation Center. Data collection was carried out with triggering questions, through individual interviews, which were recorded for later analysis. Data were analyzed qualitatively according to Content Analysis, in thematic modality. Results: The main caregiver´s are the children’s mothers, who dedicate full time to the child’s needs and, some of them need to reconcile this care with domestic tasks, work activities and personal life. These caregiver´s presented reports of tiredness, stress, helplessness feelings, unpreparedness and guilt, that reflect on the burden experienced. The possible causes of the caregiver´s burden are related to the Social Determinants of Health and could be avoided or minimized if government agencies turned their attention to these aspects, such as access to health, education and leisure. Conclusion: The caregiver´s burden could be reduced if health promoting actions were carried out in favor of these people, both those who provide care and who receive it, in this case, the children.