Parent training programs rarely have an explicit focus on improving parenting practices, parent problem-solving, or stress management (Brookman-Frazee et al, 2006). Along with increased self-efficacy, these are all aspects of parent empowerment. A focus on parent empowerment and psychological acceptance are particularly appropriate for many low and middle income countries, where mothers often shoulder full responsibility for both care and education of their children with disabilities in addition to the demands of the family and household. Moreover, even when children attend schools, there is often a deeply entrenched belief that parents should not question teachers and other professionals. Teaching parent skills and increasing parent knowledge alone is not sufficient to shift these powerful dynamics. The Parent Child Training Program (PCTP) was developed in India in 2000 with acceptance of the child and empowerment as explicit program goals. The program additionally aims to provide practical and theoretical knowledge on autism and behavior management. Training takes place over a 3-month period, with the parent and child attending together. To date, the PCTP has trained over 350 participants.
This study first describes the theoretical underpinnings of this community-based parent-training model, and presents a multi-method evaluation undertaken to understand it. The study itself is a partnership between the UCLA Culture, Brain, Development and Mental Health program, and a nongovernmental organization in India, Action For Autism.
Three consecutive cohorts of families (n=48 total) participated in the evaluation. Participants joined from a wait-list and entered on a first-come, first-served basis. Diagnosis was confirmed using the ADOS and SCQ. Both parents were interviewed at the start and end of the 3-month program and mothers attended the program. Measures consisted of a combination of standardized tools and those developed specifically for this evaluation under a broader project on research on families with autism in India. Parents and children are followed six and 12 months after the conclusion of the PCTP program. In addition to pre-post comparisons, the subsequent cohort served as a non-treatment comparison at the post-test to guard against selected threats to internal validity.
Cohorts did not differ in demographic characteristics or baseline outcome measures. Significant gains were seen across all outcome measures, including parents’ empowerment, acceptance, knowledge of autism, sense of competence, and stress. Post-test scores on these measures were significantly higher than the equivalent comparison group.
The PCTP was developed specifically to meet the needs of families in India, where disability remains highly stigmatizing and services are limited. Using both standardized measures and those developed for this study, the current evaluation provides an estimate of project impacts in key parent outcomes. The acceptance and empowerment focus of this model offers a novel way to conceptualize parent training, and has high relevance for families in situations where cultural, economic and other contextual factors may be similar to those in India. Lastly, this study suggests that existing intervention models may offer critically important information for researchers interested in testing or examining programs developed in other settings.
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