Social Support Experiences of HIV Positive HIV/AIDS Coalition Participants: A Grounded Theory Approach

Author

Melissa June Haithcox, Southern Illinois University CarbondaleFollow

Date of Award

12-2009

Degree Name

Doctor of Philosophy

Department

Health Education

First Advisor

Welshimer, Kathleen

Abstract

AN ABSTRACT OF THE DISSERTATION OF MELISSA J. HAITHCOX, for the Doctor of Philosophy degree in HEALTH EDUCATION, presented on June 29, 2009 at Southern Illinois University Carbondale. TITLE: Social Support Experiences of HIV Positive HIV/AIDS Coalition Participants: A Grounded Theory Approach MAJOR PROFESSOR: Dr. Kathleen Welshimer For more than twenty-five years HIV/AIDS has overwhelmed and devastated all corners of the world, including the United States. Grassroots organizations and governmental have responded to this devastation by implementing various strategies, including community coalitions, to counteract the social and economic effects of HIV. While HIV/AIDS coalitions resemble other health promotion coalitions, they differ because People Living With HIV/AIDS (PLWHAs) are federally mandated or required by the funder to participate. While it is thought that PLWHA membership is spurred largely by these mandates, other motivation and incentive to participate have gone undocumented. There is a plethora of research regarding membership and factors related to the success of HIV/AIDS coalitions, there is little focus on the influence of social support on community coalitions. The purpose of this study was to document the types and perception of social support experiences of People Living With HIV/AIDS with regard to their participation in HIV/AIDS coalitions. This study used a qualitative research design, guided by a grounded theory approach, to investigate and describe the social support experiences of HIV positive adults who participate in HIV/AIDS coalitions. Data collection consisted of 13 semi-structured, in-depth interviews and the researcher's personal thoughts and observations, recorded in a journal. Six main themes emerged from the data: (a) the acquisition of knowledge and information, (b) the desire to give back and help others, (c) the desire to participate in a "successful" effort, (d) the desire to stay connected through coalition activities, (e) the desire to give and receive social support, (f) PLWHA membership is the most important indicator of coalition success. Themes that emerged from participants' revolved around the need to belong and emotional support. The desire to feel valued was interconnected to most of the themes. In order to feel valued, PLWHAs had a strong desire to give back to others and strived to acquire information and skills to do so. Results revealed the influence of social support on the reasons PLWHAs join, continue or discontinue their participation in HIV/AIDS coalitions, the activities they choose to participate in, and their perception of coalition success. Recommendations for health education include exploring the inner dynamics of a coalition's membership as a way to evaluate coalition success from a more holistic and comprehensive perspective, clarify goals and objectives of HIV/AIDS coalitions to ensure members and leadership are on the same page, and explore the concept of a community organizer to cultivate participation and leadership in PLWHAs.