SUPPORT GROUPS FOR HIV+ WOMEN: AN EXPLORATORY STUDY by ROBIN LENNON DEARING (Under the Direction of Bonnie L. Yegidis) ABSTRACT Being diagnosed with HIV and living with a stigmatized chronic illness can be very isolating. Women living with HIV often feel alone and want contact with other women who share their situation (Hackl, Somlai, Kelly, & Kalichman, 1997; Heath & Rodway, 1999; Moneyham et al., 1998; Walker, 2002). One significant avenue for HIV+ women to receive the support, information, and affiliation they need is through gender-specific HIV support groups. A support group specifically for women and their needs has been recommended by researchers and is often preferred by women themselves (Carels, Baucom, Leone, & Rigney, 1998; Emlet, Tangenberg, & Siverson, 2002; Land, 2000; Meredith, Delaney, Horgan, Fisher, & Fraser, 1997; Metcalfe, Langstaff, Evans, Paterson, & Reid, 1998; Morrow, Costello, & Boland, 2001; Walker, 2002), but research is lacking about how support groups for HIV+ women can be helpful. This exploratory study addresses the following questions: (a) what are the reasons HIV+ women attend all-female support groups? (b) What happens inside an all-female support group that HIV+ women find therapeutic? (c) What benefits do HIV+ women gain from attending support groups? And (d) How satisfied are they with their support group experience? Seventy-one women attending nine all-female HIV support groups in Alabama, Georgia, and South Carolina completed a 66-item self-report questionnaire designed by this author to specifically address these research questions. Results indicate that the primary reason for attendance was to meet other HIV+ women. Therapeutic factors that women ranked as important were hope, altruism, and universality. Benefits from attendance included an increase in medication compliance, a decrease in risk re- exposure behaviors, a decrease in feelings of shame, and a network of friends to socialize with. Overall, the women were strongly satisfied with their group experience. INDEX WORDS: Support groups, Therapeutic factors, HIV, Women, Social support, Relational Theory, Social Work SUPPORT GROUPS FOR HIV+ WOMEN: AN EXPLORATORY STUDY by ROBIN LENNON DEARING B.S.W., University of South Florida, 1996 M.S.W., University of South Florida, 1998 A Dissertation Submitted to the Graduate Faculty of The University of Georgia in Partial Fulfillment of the Requirements for the Degree DOCTOR OF PHILOSOPHY ATHENS, GEORGIA 2004 © 2004 Robin Lennon Dearing All Rights Reserved SUPPORT GROUPS FOR HIV+ WOMEN: AN EXPLORATORY STUDY by ROBIN LENNON DEARING Major Professor: Bonnie L. Yegidis Committee: Nancy Kropf Margaret Robinson Electronic Version Approved: Maureen Grasso Dean of the Graduate School The University of Georgia May 2004 iv DEDICATION This dissertation is dedicated to my family: Marge McDuffie, David Lennon, Scott Lennon, Dan Lennon, Teri Lennon, Corey Lennon, Maria Porceddu, Alex Lennon, and Taya Lennon v ACKNOWLEDGEMENTS First and foremost I want to thank my husband, Jim Dearing, for his unwavering support of me in pursuing my Ph.D. I appreciate him, and his wonderful talent to be hysterically funny and keep me laughing. My life is happier than its ever been because of him. My thanks and acknowledgment for the helpful guidance, support, and assistance I received from Dr. Bonnie Yegidis, my major professor, who read and commented on this dissertation all the way from start to finish. I also acknowledge the helpful guidance and support of the other members of my dissertation committee, Dr. Margaret Robinson and Dr. Nancy Kropf. In addition, I appreciate and thank Dr. Tricia Reeves for her advice and support as a role model, mentor, and friend. I would like to acknowledge all of the women, past and present, who are or have been members of the Tuesday night women’s support group at AIDS Survival Project. They are the inspiration for this dissertation. Sincere thanks are due to the women who participated in this research and the facilitators of those support groups. Without the backing of the support group facilitators this research would not have been possible. Thank you. vi TABLE OF CONTENTS Page ACKNOWLEDGEMENTS.............................................................................................................v CHAPTER 1 INTRODUCTION.........................................................................................................1 Reasons for Attending Support Groups ...................................................................2 Theoretical Framework............................................................................................5 Types of Groups.....................................................................................................12 Group Composition................................................................................................15 Importance to Social Work ....................................................................................17 Problem Statement.................................................................................................18 Purpose of the Study ..............................................................................................18 2 LITERATURE REVIEW ............................................................................................20 Irving Yalom’s Research .......................................................................................20 Overview of Therapeutic Factors...........................................................................24 Research on Therapeutic Factors in Therapy Groups............................................39 Research on Therapeutic Factors in Self-Help Groups..........................................42 Research on Therapeutic Factors in Support Groups ............................................44 Research on HIV Support Groups for Women......................................................50 3 METHODOLOGY ......................................................................................................56 Research Design.....................................................................................................56 vii Procedures..............................................................................................................63 Data Analysis.........................................................................................................64 4 RESULTS ....................................................................................................................66 5 DISCUSSION..............................................................................................................79 Reasons for Attending Group ................................................................................87 Therapeutic Factors................................................................................................88 Group Outcomes ....................................................................................................90 Satisfaction with Groups........................................................................................93 Demographics ........................................................................................................97 Limitations of the Study.........................................................................................99 Recommendations for Social Work Practice .......................................................100 Recommendations for Future Research...............................................................103 Conclusion ...........................................................................................................103 REFERENCES ..................................................................................................................105 APPENDICES A QUESTIONNAIRE FOR HIV+ WOMEN ATTENDING SUPPORT GROUPS ...........................................................................................123 B QUALITATIVE RESPONSES ...........................................................................130 1 CHAPTER 1 INTRODUCTION “It warms my heart to be a member of my support group. It is a safe place where I can say anything I want and not feel like an outsider,” said a member of a support group for HIV+ women. Women who are diagnosed with human immunodeficiency virus (HIV) deal with myriad feelings, and some of these women turn to each other for support in living with HIV. A gathering of HIV+ women in a support group can have a profound impact on each member’s life and personal journey (Chung & Magraw, 1992; Ribble, 1989). There is something transformational and empowering in support groups and in these HIV support groups for women in particular. Yalom (1995) described these dynamics as therapeutic factors. Women living with HIV often feel alone and want contact with other women who share their situation (Hackl, Somlai, Kelly, & Kalichman, 1997; Heath & Rodway, 1999; Moneyham et al., 1998; Walker, 2002). Because of this strong desire for contact with other HIV+ women, support groups may be an ideal arrangement for them. A support group designed specifically for women and their needs has been recommended by researchers and is often preferred by the women themselves (Carels, Baucom, Leone, & Rigney, 1998; Emlet, Tangenberg, & Siverson, 2002; Land, 2000; Meredith, Delaney, Horgan, Fisher, & Fraser, 1997; Metcalfe, Langstaff, Evans, Paterson, & Reid, 1998; Morrow, Costello, & Boland, 2001; Walker, 2002). The experience of being diagnosed with