Introduction

The objective of this survey was to examine the most important issues faced by women living with an HIV and/or AIDS diagnosis. Differences and similarities amongst women of different age groups, ethnicities, and regions of the U.S. were also explored.

Methods

The survey was conducted at the 1999 National Conference on Women and HIV/AIDS held in Los Angeles from October 9-12, 1999. This conference marked the largest gathering of HIV-positive women, ever. (900 to 1,000 HIV positive women.) These women came from almost every state in the U.S. and were recruited through HIV/AIDS organizations, advertising in magazines for people living with HIV/AIDS, and word-of-mouth. The survey was administered to the HIV-positive women attending the pre-conference events. A total of 540 out of the 700 pre-conference participants completed the questionnaire (77% response rate).

To allow for a broad range in responses, the self-administered questionnaire consisted of two open-ended questions: "What is the most important issue you face as a person living with HIV/AIDS?" and "What is the most important issue you face as a woman living with HIV/AIDS?" Information on age, race and state of residence were also collected.

A review of the literature on quality of life among persons living with HIV/AIDS was conducted to best determine the categories with which to organize the responses in this survey to facilitate data analysis. In general, the studies reviewed utilized the MOS-HIV, MQOL-HIV, and McGill QOL, and examined quality of life within the following domains: physical health/functioning, mental/emotional health, social functioning and spiritual well-being. (Cohen et al., 1996; Carretero et al., 1996; Badia et al., 1999.)

Based on the quality of life categories identified in the literature and a review of the responses obtained in this study, the following eight categories were determined to be relevant in the analysis of the responses: (1) Physical health/functioning, (2) Medical/health care, (3) Mental/emotional/spiritual health, (4) Social functioning/interpersonal issues, (5) Social support, (6) Financial/economic issues, (7) Policy, (8) Education/research.

• Physical health/functioning included responses such as pain, physical problems and changes, infections, diseases, fatigue, drug side effects, and gynecological health.

• Medical/heath care included issues relating to medication, treatment, access to care, medical care (including alternative and holistic care), insurance, and health care providers.

• Mental/emotional/spiritual health included issues relating to depression, loneliness, stress, isolation, death/dying, living, survival, self-esteem, emotional pain, memory loss, spirituality, fear, maintaining positive attitude, embarrassment and shame and staying sober.

• Social functioning/interpersonal issues included relationships (dating/socializing), sexuality, discrimination, acceptance by others, how treated by others, disclosure, motherhood roles and responsibilities, caretaking, family concerns, violence, meeting other HIV positive women, confidentiality/privacy and transmitting the virus to others.

• Social support included support groups and services, caring for children/childcare, peer support for other HIV positive women, and intervention/counseling for the children.

• Financial/economic issues included housing, childcare costs, food, transportation, financial assistance, employment/working, benefits/SSDI, costs of care, medication.

• Policy issues included legislation, advocacy, incarceration/prison.

• Education/research issues include clinical trials, research on women, funding for research/programs, education for general public, awareness, lack of information, ignorance.

Analyses

Descriptive statistics were conducted to characterize the demographics of the sample. Chi-square tests were used to compare differences in issues between: women of various race/ethnicities, age groups, and region of the U.S. (i.e., West, Midwest, South, East, Other).

Results

Demographics:

Table 1 shows the demographic characteristics of the sample. The mean age of the respondents was 39.6 years old (range 18-64, SD = 7.8). Fifty-seven percent (57%) were African American, 21% Latina/Hispanic, 18% Caucasian, and 3% Asian American, Native American or Other.

Most of the respondents resided in either the East Coast (41%) or West Coast (27%). The states with the greatest number of respondents were New York (28%), California (21%), Illinois (6%) and Texas (5%). Respondents came from every state in the union except Delaware, Nebraska, New Hampshire, South Dakota, Washington, and West Virginia. Chi-square tests indicate that respondents who were African American and Latinas were more likely to be from a West coast state (p<0.001).

T-tests showed no differences in mean age among the different racial/ethnic groups or among the different regions.

Most Important Issue Faced by a Person with HIV/AIDS

The top ranked issues by domain are presented for each ethnicity in Table 2. Five hundred and twenty-nine women completed the question on the most important issue the respondents faced as a person living with HIV/AIDS. Overall, respondents were significantly more likely to choose Physical health/functioning (19%). Medical/health care (18%), Social Functioning/interpersonal (17%), and Financial/economic issues (16%) as most important (p-value<0.001).

• Physical health functioning was found to be the most important issue faced by a person living with HIV/AIDS for 102 of the respondents. Of these, 25% mentioned staying healthy, 17% drug side effects, and 15% physical changes.

• Ninety-five respondents felt that medical/health care was their main concern. Medications (38%), access to care (17%) and medical care (15%) were the top issues mentioned.

• Social functioning/interpersonal issues were viewed as the most principal issue they faced as a person with HIV/AIDS by 88 of the respondents. Discrimination/being accepted (23%) and voluntary disclosure (22%) were the most common responses.

• Of the 86 respondents who felt that financial/economics was the most important issue they faced, the top concerns were housing issues (41%) and money (33%).

• Mental/emotional/spiritual health were perceived to be the top concern by 57 of the respondents. These issues included living/survival (25%), death/dying (2150 depression (12%), and loneliness (12%).

• Fifty-one respondents viewed education/research as their major concern as a person living with HIV/AIDS. Of these, lack of information (28%) and education for the general public (28%) were the top issues mentioned.

• Social support was the main concern of 42 respondents in the sample. This includes caring for children (45%) and support groups (17%).

Demographic Differences in the Most Important Issue As a Person with HIV/AIDS

Although chi-square analyses did not result in significant differences in the issues faced as a person living with HIV/AIDS by race/ethnicity, age group, or region, there were differences in the most important issues faced as women.

Demographic Differences in the Most Important Issue As a Woman with HIV/AIDS

Although chi-square analyses did not result in significant differences in the most important issues faced as a woman living with HIV/AIDS by race/ethnicity, age group, or region, there were significant differences in the most important issue by race/ethnicity among the respondents from the Western region (p<0.017). Latinas were more likely to mention physical health/functioning issues, African Americans were more likely to mention social functioning/interpersonal issues, and Caucasians were more likely to mention issues such as social support, education/research and policy.

Additionally, the issue the respondent felt was most important as a person living with HIV/AIDS was found to be significantly associated with the most important issue as a woman living with HIV/AIDS (p<0.001). This was true specifically for those who felt that physical health/functioning, medical/health care, or social functioning/interpersonal issues were most important discussion.

References

1. "Quality of Life in HIV disease as measured by the McGill Quality of Life Questionnaire" S. Robin Cohen, S. Ansar Hassan, Bernard J. Lapointe and Balfour M. Mount. AIDS 1996, 10:1421-1427.

2. "Reliability and validity of an HIV-specific health-related quality of life measure for use with injecting drug users" Maria D. Carretero, Adrian P. Burgess, Pilar Soler, Miguel Soler and Jose Catalan. AIDS 1996, 10:1699-1705

3. "A randomized study comparing instruments for measuring helath-related quality of life in HIV infected patients" Xavier Badia, Daniel Podzamczer, Margarida Garcia, Carmen Lopez-Lavid C, Ezeqwuiel Consiglio and the Spanish MOS-HIV and MQOL-HIV Validation Group. AIDS 1999, 13:1727-1735.