Evaluation of the Program Parents Taking Action for Parents of Pre/Adolescents with Autism Spectrum Disorder in Colombia

Background and purspose: The prevalence of Autism Spectrum Disorder (ASD) has been increasing in the last decades around the world. In Colombia, there is not a clear statistic about the prevalence of ASD, but it is estimated that 16% of the population under 15 years old has some type of developmental disability. In addition, disability in Colombia is still considered a taboo and it has a strong stigma that prevents people with disabilities from fully participating in the community. Unfortunately, the lack of research and information about supports for families of children/pre/adolescents with ASD limits the understanding of how ASD is approached and what services and supports are available for this population. This project includes a curriculum for Colombian parents of pre/adolescents with ASD which includes topics of puberty, sexuality, and adolescence development. This research project evaluates the effectiveness of the program Parents Taking Action (PTA) in Bogota, Colombia. This program aims to increase parent empowerment, at the family level, by increasing aspects such as self-efficacy, knowledge, goal attainment, and use of new strategies/skills.

Methods: this study used a quasi-experimental pretest-posttest design with multiple replications and follow-up. This research design included two intervention groups and one control group. In addition, the program included 4 weekly sessions; each session was three hours long and included the topics of the curriculum, active learning activities and discussions. The program includes 9 modules, and it is designed to provide parents with a space to practice strategies, learn from others and set goals.

Results: the PTA program was offered to 38 Colombian parents of pre/adolescents with ASD between the ages of 10-17 in the city of Bogota. This study showed that there were significant gains in the pre-post analysis in all three groups for levels of empowerment, knowledge, self-efficacy, and use of strategies. Also, the difference between intervention groups and the control group was significant in all dimensions (knowledge p<0.000; use of strategies p<0.001; empowerment p<0.005; and self-efficacy p< 0.000).

Conclusion: the results of this study show that the program Parents Taking Action is effective in terms of increasing knowledge, use of strategies, self-efficacy, and empowerment in relation to the topics related to puberty, adolescence and sexuality for parents of pre/adolescents with ASD. Also, the findings also indicated that parents are not only acquiring knowledge, but they are also applying the knowledge and strategies with their children. This is also significant as their empowerment and self-efficacy increased after receiving the program. The program had a high impact in the Colombian participants as the information is scarce and parents do not have resources to be informed about the complicated developmental stage of pre/adolescence. Finally, the program is an effective tool for community organizations and health providers to provide extra support to these families during their youth’s stage of puberty and pre/adolescence.