HIV PREVENTION COMMUNICATION IN FAMILIES AFFECTED BY HIV/AIDS BY LAURA LEIGH EDWARDS DISSERTATION Submitted in the partial fulfillment of the requirements for the degree of Doctor of Philosophy in Community Health in the Graduate College of the University of Illinois at Urbana-Champaign, 2012 Urbana, Illinois Doctoral Committee: Professor Janet Reis, Chair Professor Reginald Alston Professor Sari Gilman Aronson Peter Mulhall, Ph.D. ABSTRACT Introduction: Parents have been considered an underutilized resource for educating children about HIV prevention. Parents and other family members can play a critical role in prevention efforts by using effective parenting practices, communicating their values and expectations, and modeling strategies that reduce the risk of acquiring HIV. Despite the potential protective role of parent-child communication on adolescent sexual and drug use behavior, much remains unknown about the processes and contexts in which these communication encounters occur. Methods: This study examined parent-adolescent communication about HIV prevention in families affected by HIV. Specifically, the project used a mixed method approach to identify the strategies parents living with HIV/AIDS use to discuss HIV prevention with their 10-18 year old uninfected adolescents. Whereas in-depth interviews shed light on what motivates and/or prevents parents from discussing HIV prevention with adolescents, a questionnaire was used to collect information on theoretical concepts previously identified as important to health behavior and health communication research. Overall, the major aims of this project were as follows: 1) to identify facilitators and barriers to talking about HIV prevention in a family context, particularly those that may be unique to families affected by HIV/AIDS, 2) to describe the strategies parents living with HIV/AIDS use to communicate about HIV prevention, and 3) to compare parents’ perceived effectiveness of those strategies to what current health behavior research deems effective parent-adolescent communication. ii Results: Parents reported frequent conversations about HIV-related topics, but also faced a number of barriers when deciding whether or not to talk and how much information to discuss with adolescents. Parents who reported lower levels of HIV disclosure were less likely to communicate about HIV prevention with their children in bivariate analyses, however this association did not remain significant in multivariate analyses. Parents who reported higher levels of HIV-related stress were more likely to report using passive strategies to discuss prevention information (in both bivariate and multivariate analyses). Overall, parents indicated a great need and desire for social and professional support when engaging in prevention conversations, emphasizing the important role of HIV care teams and support programs in providing parents with effective communication training. Conclusion: This project identifies ways to better support parents with HIV/AIDS in their efforts to communicate with adolescents about safer sex, drug use, and HIV infection. Findings from this study are applicable to researchers and practitioners involved in HIV prevention and/or management of HIV disease. Results suggest that parents with HIV do experience unique barriers to parent-adolescent communication, but that existing HIV prevention programs could be tailored to meet the needs of these families with relatively modest effort. Future studies with larger sample sizes are needed to replicate the quantitative aspects of these findings. iii DEDICATION To Dale E. Brashers Gifted scholar, phenomenal mentor, and loyal friend. You have left an indelible imprint on my life and scholarship, both personally and professionally. Thank you for your generosity, poise, energy, compassion, and for many jokes along the way. iv ACKNOWLEDGEMENTS This project would not have been possible without the support of a number of individuals and organizations. I would like to thank my doctoral advisor, Dr. Janet Reis, for her incredible wisdom and patience, for being both encouraging and realistic, and for being willing to embrace a student outside of her department as one of her own. I would also like to thank my other committee members for their support and thoughtful comments, including Dr. Sari Aronson, Dr. Reginald Alston, and Dr. Peter Mulhall. It is difficult to express how helpful each of you has been at various aspects of this process. Friends and family members provided the much needed moral support to see this project to completion. My husband, Patrick, has celebrated every milestone along the way, and continues to amaze me with his love and support. To the extended “Draper Household,” I thank you for being coffee shop companions, late night study buddies, comic relief, and for much needed graduate and medical school debriefing sessions. Finally, to the families who were willing to share their stories and experiences and the organizations that helped with recruitment, I cannot thank you enough. Please know how important our conversations have been in shaping my understanding of research, medicine, and a holistic view of HIV treatment and care. v RESEARCH SUPPORT This study was completed with support from the National Institute of Mental Health (NRSA Predoctoral Training Grant F30 MH086364) and the Sherri Aversa Memorial Foundation Dissertation Completion Award. Funding was also received from the Graduate College, College of Medicine, and Department of Communication at the University of Illinois at Urbana-Champaign. Thank you to the following individuals who provided assistance with recruitment and/or data collection and management: Cindy Goetting, Pam Talbott, Kathleen Weber, Sally Urwin, Angie Shanksy, Sarah Kubicka, Sarah Coleman, Esmeralda Rosales, Eileen Podlasek, Natalie Bradford, Brad Engelbarts, Michelle Moore, Nadine Schneider, Markisha Foster, Natasha Shrikant, and Samantha Hack-Ritzo. Part of the data in this document were collected by the Women’s Interagency HIV Study (WIHS) Collaborative Study Group Chicago Consortium (Kathleen Weber). The WIHS is funded by the National Institute of Allergy and Infectious Diseases (UO1-AI-35004, UO1-AI- 31834, UO1-AI-34994, UO1-AI-34989, UO1-AI-34993, and UO1-AI-42590) and by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (UO1- HD-32632). The study is co-funded by the National Cancer Institute, the National Institute on Drug Abuse, and the National Institute on Deafness and Other Communication Disorders. Funding is also provided by the National Center for Research Resources (UCSF-CTSI Grant Number UL1 RR024131). The contents of this document are solely the responsibility of the author and do not necessarily represent the official views of the National Institutes of Health. vi TABLE OF CONTENTS CHAPTER 1: INTRODUCTION .................................................................................................. 1 CHAPTER 2: LITERATURE REVIEW ....................................................................................... 9 CHAPTER 3: METHODS ........................................................................................................... 27 CHAPTER 4: QUALITATIVE RESULTS ................................................................................. 61 CHAPTER 5: QUANTITATIVE RESULTS ............................................................................ 167 CHAPTER 6: DISCUSSION ...................................................................................................... 200 REFERENCES ........................................................................................................................... 225 APPENDIX A: RECRUITMENT FLIER ................................................................................. 238 APPENDIX B: LETTER TO RECRUITMENT ORGANIZATIONS ...................................... 239 APPENDIX C: TELEPHONE RECRUITMENT SCRIPT ....................................................... 240 APPENDIX D: INFORMED CONSENT FORM ..................................................................... 241 APPENDIX E: FAMILY TREE ................................................................................................ 242 APPENDIX F: INTERVIEW SCRIPT ...................................................................................... 243 APPENDIX G: QUESTIONNAIRE.......................................................................................... 246 APPENDIX H: TRANSCRIPTION TEMPLATE .................................................................... 255 APPENDIX I: CODEBOOK EXCERPT .................................................................................. 256 APPENDIX J: CODING AGREEMENT SHEET .................................................................... 258 APPENDIX K: OUTLINE OF ANALYSIS FOR REGRESSION MODELS .......................... 259 APPENDIX L: SIGNIFICANT CORRELATION VALUES FOR PREDICTORS ................. 266 vii CHAPTER 1: INTRODUCTION Background on HIV/AIDS On June 5th, 1981 the Centers for Disease Control and Prevention (CDC) published a report documenting five cases of Pneumocystis carinii pneumonia (PCP), a rare form of pneumonia generally only seen in individuals with severely compromised immune systems. All five men were young, previously healthy homosexuals living in Los Angeles (CDC MMWR, 1981). The authors concluded that these cases were indicative of a “cellular-immune dysfunction related to a common exposure that predisposes individuals to opportunistic