Challenges and Priorities in Families of Children with Autistic Spectrum Disorders in Dominican Republic

Background:

In developing countries, access and quality to basic services can be a barrier to the developmental of an autonomous life especially for people with Autism Spectrum Disorders (ASD). These limitations are the ones that deal families with challenges to overcome to guarantee the quality of life of their children with the condition. In Dominican Republic there is a lack of information about the challenges and priorities experienced by caregivers of people with ASD. The access to this information can guide to political decision in order to strength or develop priorities services.

Objectives:

To identify the challenges and priorities experienced by caregivers of people with Autism Spectrums Disorders in Dominican Republic.

Methods:

This research was part of a study carried out in Latin America, and was led by specialists of Argentina, Brasil, Chile, Dominican Republic, Venezuela and Uruguay. AS for collecting information they used SEAN Caregiver Needs Survey. To administer the survey they used a digital platform. The National Committee on Bioethics in Health in the Dominican Republic approved the research project.

Results:

In Dominican Republic 152 surveys were collected, of which only 147 were completed. The three most important challenges presented by the families were: difficulties in communication (49.7%), difficulties in social interaction (42.2%), and problems behaviors (40.8%). As per challenges they identified: daily life skills (40.1%); concerns about safety/ notion of danger (34%); diet/feeding/feeding difficulties( 21.1%); repetitive behaviors/ restricted interests/ insistence that things remain the same ( 11.6%); sleep problems ( 10.2%); health problems( 6.8%); sexuality ( 9.5%); and sensory themes( 6.1%).

For the largest number of families surveyed, the most compelling challenges were to get children to receive adequate education (80.3%), followed by having access to good health services for people with ASD (62.6%) and to ensure that the basic rights for people with ASD were protected (56.5%). The family’s highest priority was to achieve better education services (75.5%), better health services (48.3%), better social services and social assistance (40.8%), more rights for individuals with ASD (33.3%), and greater awareness in the community (28.6%).

Conclusions:

The most significant challenges in Dominican Republic are related to opportunities in the context of education, health services and rights guarantees. In responding to priorities, families are again emphasizing the importance of education, health and rights services and adding social services and community’s awareness to the condition. These results indicate the need to continued research about this situation in this country to create and support the development of policies and programs that can positively impact in the ASD population. More investigations to expand the sample are necessary.