SPNS/Fax: An Electronic Report from HRSA/HAB's SPNS Cooperative Agreements:
Volume 3, Issue 8 (April 17, 1998)

Information dissemination from 27 Innovative Models of HIV Care projects funded as Special Projects of National Significance by the HIV/AIDS Bureau (HAB) of the Health Resources and Services Administration (HRSA).

Introduction

Welcome to SPNS/Fax: An Electronic Report from HRSA/HAB's SPNS Cooperative Agreements. In each issue of SPNS/Fax, we will highlight findings from the HRSA Special Projects of National Significance Program Cooperative Agreements. The projects have been funded to develop innovative models of HIV/AIDS care. SPNS/Fax reports are distributed every two weeks by fax machine to all subscribers. All issues of SPNS/Fax are also available at this Web site. Due to slight differences in the media, issues distributed by fax machine may appear slightly different from those posted on this Web site, but the content is identical.

The Metro DC Collaborative for Women with HIV/AIDS advocates for woman-focused care through organizational collaboration and the inclusion of women with HIV/AIDS in policy development. One of the project’s primary objectives is to provide leadership nurturance for women living with HIV/AIDS through training, team building, and information dissemination. The Collaborative initiates various project activities — information sharing meetings, roundtable discussions, training and skills building, technical assistance, and needs assessments — designed to reduce cultural, linguistic, and organizational barriers to care experienced by women living with HIV/AIDS.

One example is the project’s advocacy training session, "Fighting for Our Lives," which aimed to empower women living with HIV/AIDS to be effective advocates for care and services in the metropolitan area around Washington, D.C. The ultimate objective was to nurture the leadership skills of women with HIV/AIDS in order to increase their participation in policy meetings and forums where critical decisions about AIDS-related programming and funding are made. The training created a safe place where women with HIV/AIDS could get together to share their experiences, gain support, and strengthen their advocacy skills in order to help themselves and others. Workshops were provided on numerous topics, such as: effective doctor-patient relationships; constructive ways for dealing with difficult people, depression or stress; importance of getting involved; becoming an advocate; dealing with physically/emotionally abusive partners; support for children confronting HIV/AIDS in the family; clinical trials and drug studies; value of support groups; and legal advocacy (appealing denial of Medicaid or other public entitlements).

Sixty-four women living with HIV/AIDS attended the First Annual "Fighting for Our Lives" Advocacy Training, which occurred on June 14 and June 21, 1997. Most of the women were African American or Latina and between the ages of 25 and 54 years. To obtain feedback regarding these two trainings, 56 (87.5%) participants were interviewed and 62 (96.9%) completed a self-administered survey. The training sessions were extremely well received and participants consistently indicated that they felt positively about the training experience. In both the interview and self-reported responses, the majority of women rated the training sessions very highly as illustrated in the chart on the right. 83.9% stated that the information presented would "definitely" help them advocate for their needs and those of other women living with HIV/AIDS. Furthermore, one of the primary objectives of the training was to evaluate the participants’ involvement in HIV-related policy meetings such as the Ryan White Title I Planning Council and PWA Committee. Thus, the women were asked questions about wanting to attend and actually attending such meetings and whether they intend to participate in the future (i.e., after the training). In response, 91.1% stated that they had ever wanted to participate in an HIV-related policy meeting, 58.9% indicated that they actually had participated, and 82.1% reported that they intend to participate in such meetings in the future.

Both quantitatively and qualitatively, the women indicated that the trainings helped them in many ways — from personal empowerment to learning about how to help others, including attending and speaking at policy meetings. Issues covered in the training sessions that women found most valuable ranged from gaining social support and the realization that they were not alone to learning how to navigate the service system in the Metropolitan DC area. Participants made it clear that they considered the training to be worthwhile and highly relevant to living with HIV/AIDS and advocating for themselves. Given the advocacy trainings’ positive impact on women with HIV/AIDS, the Metro DC Collaborative will conduct its second "Fighting for Our Lives" in June 1998.

For more information, contact Leslie Wolfe, Ph.D., Center for Women Policy Studies, 1211 Connecticut Ave, NW, Suite 312, Washington, D.C. 20036, 202.872.1770 (phone), 202.296.8962 (fax).

SPNS/Fax is produced by The Measurement Group–PROTOTYPES Evaluation and Dissemination Center (EDC). Editorial comments should be made to The Measurement Group at 5811A Uplander Way, Culver City, California 90230, 310.216.1051, 310.670.7735 (fax).
 

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