TEACHING TABOO TOPICS WITHOUT TALKING ABOUT THEM: AN EPISTEMIC STUDY OF A NEW APPROACH TO HIV/AIDS PREVENTION EDUCATION IN INDIA A DISSERTATION SUBMITTED TO THE SCHOOL OF EDUCATION AND THE COMMITTEE ON GRADUATE STUDIES OF STANFORD UNIVERSITY IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY Piya Sorcar March 2009 © Copyright by Piya Sorcar 2009 All Rights Reserved ii iii iv Abstract Background: Solving the problem of how to provide effective health education on diseases subject to social taboos is an immediate need. The social stigma of HIV/AIDS is particularly prominent in the developing world, where 95 percent of all HIV-infected persons live. Millions of people risk death from HIV/AIDS while cultures and laws resist change. New approaches must be created to provide education despite whatever social, structural, cultural, and legal barriers exist. Fortunately, the emergence of new media and information and communication technologies (ICT) has provided new ways to help bypass social taboos and provide effective education. This dissertation discusses these challenges and presents criteria for evaluating the efficacy of educational campaigns aimed at promoting awareness relating to taboo topics using a specially designed HIV/AIDS curriculum—Interactive Teaching AIDS—as an exemplar. In health interventions, knowledge is a necessary, although seldom sufficient, step toward bringing about changes in attitudes and behaviors. The Interactive Teaching AIDS (ITA) application was developed, tested, and optimized over a two-year period to provide HIV/AIDS education despite social and cultural challenges. It incorporates key pedagogical and communication theories and approaches in order to maximize its efficacy. To provide psychological comfort and promote coherent understanding, this ICT-based application couples the presentation of biological aspects of transmission with culturally-familiar euphemisms and metaphors to communicate ideas about prevention measures. Created using a rigorous, iterative, and research-based process, the 20-minute application provides detailed yet accessible culturally-appropriate explanations of all key aspects of HIV/AIDS prevention. The design process included the v development of multiple prototypes and over 150 iterations in total, starting with concept maps, screenplays, storyboards, and low-fidelity paper prototypes, eventually leading to interactive versions of the curriculum in multiple media, including a final version in Adobe Flash. Methodology: High school and college students (N=386) from New Delhi, Haryana, and Punjab, were randomly selected across four institutes in India. No one refused to participate. Students at three of the four institutes were assigned to the intervention group, and students at the fourth institute were assigned to the control group. Intervention students received the ITA application. All students received a baseline pretest, followed by an immediate posttest, and finally a retention test one month later to assess outcomes. The assessments measured knowledge of HIV transmission and prevention methods as well as attitudes regarding social acceptance of those infected with the virus. Results: Experimental students exhibited statistically significant gains in posttest knowledge (p<.001) and positive changes in attitudes (p<.001), even after controlling for pretest knowledge, gender, mother’s education and father’s education. One month later, the experimental students retained significant amounts of prevention knowledge (p<.001) and displayed positive changes in attitudes (p<.05). On the 40-item knowledge assessment, the experimental group scored 8.25 points higher than the control group participants during the posttest, and 7.03 points higher during the retention test. At onset, males performed significantly better on the pretest than females (p<.01), however, after interacting with the ITA application, there was no differences between the knowledge gained and retained by males or females in the posttest or retention test, closing the achievement gap. Although HIV/AIDS is generally considered a taboo topic vi to discuss throughout India, 98.6 percent of intervention students indicated they were comfortable learning from the application, and 94.5 percent said they learned more about prevention through the ITA tutorial than through any other prior communications channel, including television and school. Results revealed that after watching the animated tutorial, a significantly greater proportion of intervention students indicated they felt less afraid of interacting with HIV-infected people rather than feeling more afraid (p<.001) and were less afraid of being infected with HIV rather than more afraid (p<.001). One month later, 92 percent of students exposed to the intervention had shared information with others (p<.001) and 74 percent had sought additional HIV/AIDS-related information on their own (p<.001). Conclusion: For people living in areas that cannot easily access explicit HIV/AIDS materials due to social, cultural or other constraints, these results suggest that it is possible to design curricula that are socially- acceptable and accurate, that promote significant gains in learning, retention, and changes in attitudes. Furthermore, these materials can encourage learners to proactively seek more information regarding the taboo topic and share prevention information with others. Educators who are reticent to teach about such subjects due to embarrassment or lack of health expertise can utilize similar applications to educate students. Such efforts can also close the knowledge gap between female and male learners. vii Preface and Acknowledgements This research would not have been possible without the unwavering support of my family, friends and professors. I would like to thank my passionate and dedicated committee members, Shelley Goldman (School of Education), Clifford Nass (Department of Communication), Martin Carnoy (School of Education), Cheryl Koopman (Department of Psychiatry and Behavioral Sciences) and Randall Stafford (School of Medicine), without whose support this research could not have been done. Over the years, Shelley has taught me so much about curriculum construction, iterative design approaches with interactive technologies, and identifying with the needs and desires of learners. She has always encouraged me to follow my passion and fight for social justice and equality. From the beginning, Cliff made me believe in the impossible and encouraged me to develop a great appreciation for evidence-based practices. His devotion to his students and passion towards helping them excel is truly rare, and I am immensely grateful for all his support. Martin has supported and challenged me to explore new territories and theoretical frameworks with my research. His insights have been invaluable. Cheryl spent countless hours sharing ideas around cultural-sensitivities and the importance of stigma and health- related research and practices. Her experience with developing strong assessment measures has provided a critical foundation for my research. I would also like to thank Randall, whose sagacious judgment and strong statistical background have been extremely helpful in informing my work. I want to thank my colleagues in the Learning Sciences & Technology Design program, the International Comparative Education program, the Human and Interactive Media (CHIMe) Lab at the Department of Communication, and the Stanford Prevention Research Center at the viii School of Medicine, for providing me a home through which to develop, test, and iterate upon my research. I want to wholeheartedly thank the Apeejay Education Society and the Apeejay Stya Education Research Foundation for providing me the opportunity to conduct research in several of their institutes. Thank you to my friends Neha Berlia and Aditya Berlia for making this research possible and coordinating efforts in India. Thank you to the dedicated principals, teachers and staff members who facilitated in managing ground-related efforts. And most importantly, thank you to the hundreds of students, at Stanford and in India, who participated in this research and helped us learn more about ways to teach about sensitive subjects. The research and development for the Interactive Teaching AIDS curricula and applications would not have been possible without the dedication and talent of numerous faculty members and researchers in many different disciplines. It was your support for this research that helped it reach people all over the world. Thank you to Doug Owens, Paul Wise, Eran Bendavid, and Swati Tole at the Health Research and Policy Program at the School of Medicine; David Katzenstein, Seble Kassaye, and Lucy Thairu at the Infectious Disease Department at the School of Medicine; Roy Pea, Rich Shavelson, Paul Kim, Decker Walker, Ann Porteus, David Labaree, Rebecca Tseng-Smith, Amy Yuen at the School of Education; Gary Mukai, Rafiq Dossani and my other colleagues at the Freeman Spogli Institute for International Studies and the Stanford Program on International and Cross-Cultural Education; Tina Seelig, Harry Greenberg and Rajiv Doshi at the Stanford Biodesign Program; Terrence Blaschke at the Clinical Pharmacology Department in the School of Medicine; Donnovan Yisrael, Community Health Specialist at Vaden Health Center; ix Syed Shariq, Janine Giese-Davis, Ade Mabogunje and my other colleagues at the Kozmetsky Global Collaboratory for all our insightful discussions; Anne Firth Murray