THE DIFFICULTIES OF WOMEN LIVING WITH HIV INFECTION

by

Jennifer Jackson Gray, PhD, RN

Reprinted from Journal of Psychosocial Nursing, May 1999

http://willmar.ridgewater.mnscu.edu/

Ilness is inherently stressful, especially those that are life threatening and associated with social stigma. HIV is both life threatening and often viewed as an illness associated with socially inappropriate or undesirable behaviors. Although the stresses associated with living with HIV are assumed to be great, the views of the affected individuals, specifically women, have not been assessed.

The epidemic was first recognized in men and early studies on psychosocial aspects of the infection were conducted with predominantly male samples. Women with HIV describe the health care provider's lack of knowledge and compassion as the most salient barrier to health care services (AIDS Legal Referral Panel [ALRP], 1998). Nurses must become more aware of stressors for women with HIV infection. Only then is the nurse prepared to assess and plan effective interventions.

The purpose of this article is to capture the responses of women with HIV infection to the question, "What [aspect] about living with HIV infection has been the most difficult for you?" The data were obtained as part of a larger study that examined both quantitative and qualitative aspects of stress among women with HIV infection. The quantitative results from the study have been submitted for publication elsewhere.

BACKGROUND

The number of women living with HIV infection continues to climb despite a decline in infection rates in other populations. Worldwide, a woman becomes infected with HIV every 20 seconds (HIV Frondine, 1997). In 1996, women accounted for 20% of those with AIDS in the United States (Centers for Disease Control and Prevention [CDC], 1997). The rate of AIDS deaths among women declined by 7% in 1996 compared with a 19% decline for the overall AIDS population (CDC, 1997). AIDS is the third leading cause of death among women of childbearing age (15 to 44 years) (CDC, 1996). Among black women in the same age group, AIDS is the leading cause of death (CDC, 1996).

Minority women account for 21% of the population in the United States; they also account for 77% of the women with AIDS (CDC, 1997). Race, gender, and social class interact to place women at increased risk for HIV infection and poverty (Osmond et al., 1993). Medicaid was the. primary payor for more than half of the hospital stays of HIV infected women (U.S. Department of Health and Human Services [DHHS], 1995). Heterosexual contact has bypassed intravenous drug use as the most common means of transmission for women (CDC, 1997). Although HIV infects women in all socioeconomic levels, the majority of HIV positive women are poor and socially disadvantaged (Andrews, Williams, & Neil, 1993).

Mortality rates from HIV/AIDS appear to be similar for men and women when access to care is equal (DHHS, 1995). Not only are women at greater risk for contracting HIV because of gender, race/ethnicity, and poverty, these same factors are barriers to accessing health care. These barriers are critical because access to care determines to a significant degree who lives or dies (ALRP, 1998).

The defining criteria of AIDS were expanded to include female-specific symptoms in 1993. Because many women with HIV die without an AIDS diagnosis, Melnick, Wertheimer, and Pinn (1995) expressed concern that the number of women dying with AIDS may be underestimated.

AIDS in both men and women is often diagnosed as a result of the presence of Pneumocystis caring pneumonia. Kaposi's sarcoma is another condition frequently leading to an AIDS diagnosis, but it is rarely seen in women. AIDS in women is usually diagnosed based on esophageal candidiasis, chronic herpes simplex, and invasive cervical dysplasia (Peng, 1998). The first HIV related symptoms for which women seek care are usually recurrent candidal vaginitis, bacterial pneumonia, and lymphadenopathy (Peng). Farzadegan and colleagues (1998) found that women with half the viral loads of their male counterparts progressed to AIDS in* a similar length of time. These findings have clinical implications because antiretroviral therapy is initiated based on viral loads. It also emphasizes the biological differences between infected men and women.

METHOD

Nurses in AIDS care were recruited as data collectors through a professional journal and networking at conferences. Support groups of HIV positive women were also contacted about participating in the study. Using data collectors privy to the serostatus of potential subjects protected the confidentiality of the subjects. .Because of the use of volunteer data collectors and a variety of settings, the data collection was controlled by using pencil and paper instruments to ensure each woman responded to the same questions. Having the women respond in writing to all the instruments, including the question of what was the most difficult aspect of living with HIV infection, was also a limitation. Education and culture may have influenced the information the women felt comfortable sharing in writing.

The researcher coded the responses by themes using the constant comparative method (Lindlof, 1995; Weber, 1990). Clustering was used to group the themes into mutually exclusive categories whose boundaries reflect differences in the content of the grouped responses (Krippendorff, 1980). The process was repeated several months later by the researcher with similar results. Although a weak measure of reliability, the stability of the findings lends credibility to the resulting categories (Weber).

DEMOGRAPHIC
CHARACTERISTICS

A convenience sample of 80 women positive for HIV women residing in 10 states comprised the study. The average age of the women in the study was 35.8 years (SD=9.2, range: 20 to 65). Fourteen of the women were caring for an HIV-positive spouse or lover. Only two of the women were caring for HIV positive children. Minority women in the study totaled 41 (51.4%), most of whom were African American(n=33). Only 22 of the women were married or partnered; 13 were widows. Another 20 women were divorced or separated.

Most of the women who were employed (n=30) were not caring for an HIV positive family member. A total of 33 women were unable to work as a result of ill health. Although 38 subjects had household incomes of less than $9,999 a year, 6 had household incomes greater than $50,000. High school was the highest level of educational achievement for 21 of the subjects; 28 reported attending college and another 10 had college degrees.

Heterosexual activity was the mode of transmission for 57.5% of the subjects. The next most frequent mode of transmission was intravenous drug use. The average length of time from diagnosis to data collection was 45.9 months (SD=32.5). The number of months the subjects had known their serostatus ranged from 2 to 125 months.

FINDINGS

Although the women described a wide range of stressful aspects involved in living with HIV infection, four categories of stressors emerged through content analysis: fears, limitations, symptoms, and emotions. Each of these categories will be described and examples of the subjects' statements provided.

Fears

Fear of disclosure. Sixteen women identified shame, secrecy, or disclosure as being the most stressful aspect of living with HIV infection. The stigma associated with the diagnosis was typified by the statement that the most difficult aspect of HIV infection was the "society shame; dealing with the stigma that society places." Having to hide the diagnosis or realizing that others knew the diagnosis "without me telling them" was also identified as stressful.

One women believed that "the hardest part for me has been the secrecy. Feeling that I cannot tell everyone what is wrong for fear of people's perception of those with HIV" Another participant reported that "the disease has such a stigma attached that I am afraid to share my diagnosis with family members and friends."

Fear of dying. One participant fought against the "pressure to label the disease as a `death sentence,"' considering the label a public misconception about the virus. Other women acknowledged their own perceptions of the diagnosis as a death sentence, admitting their concerns about becoming more ill and eventually dying. The most stressful aspects of the infection were described as the "fear of dying after a long painful illness that no cure has been found for yet," and "knowing that it is a progressive illness that will eventually kill me." Especially poignant was one women's realization that "because of HIV, I am going to have to leave my children before they grow up."

Disease-related limitations

For some women, concerns about death were overshadowed by the limitations they were already experiencing in their lives. Some of the limitations were comprehensive and stated as "not being able to have a full life" and " . . . not being able to do the things I used to do." Some of the limitations were a result of caring for other family members who were infected. One women was "trying to care for a child who is also infected." Another was "taking care of a dying husband."

Reproductive and sexual concerns included "the thought of never having children"; " . . . not being able to have more children"; and "not wanting to have sex as much as my boyfriend because of my virus." Physical and emotional limitations were also listed.

One woman described the most stressful aspect as "dealing with my husband's guilt and coping with the physical limitations imposed by HIV" Another wrote " . . . the emotional and physical limitations it has brought to my life."

The appearance of financial limitations was not surprising considering 33 of the women were unable to work. This inability resulted in loss of salary and insurance for one participant. These losses placed limitations on the women and required "getting adjusted to a new income level" and possible "financial dependence on family to pay for medications and doctors."

Symptoms

Physical symptoms of the infection, such as fatigue and pain were linked to the demands of treatment. The intensity of this stressor is captured by one participant who stated that "the most difficult part is staying sick all the time." Being sick involved symptoms, such as declining vision, weight loss, and pain.

Two women noted that physical symptoms were especially troublesome as signs of disease progression. Consequently, there was ".`the daily worry of what is next or if certain things are signs of new disease" and " . . . worrying every time I get a cold or sinus infection." One participant reported staying well had become a full-time job. The emergence of symptoms, led to "feeling helpless," and "having no control over the symptoms or course of the illness," along with "living with uncertainty, unpredictability."

Emotions

Roller coaster. This uncertainty and the struggle toward acceptance was pictured by one woman as an "emotional roller coaster-a roller coaster that does not end and you cannot get out." Another women stated that living with HIV infection was "very hard to deal with at times, for me; I have my days."

Anger, depression, and loneliness were identified by several women as being difficult aspects of HIV infection. Regrets related to the behaviors of others included "realizing that me and my mate have HIV because of him not using his head," and "being angry because my husband gave it to me." A woman caring for an infected family member identified " . . . the pain of watching someone suffer" as stressful.

Impact on others. Some of the concerns voiced by the women were related to the impact of the illness on other people. One woman was concerned about the "possibility of infecting my husband and my children not knowing." Concerns were shared about " . . . the `stress' it has put on my mom and other family members."

Women chose to withhold the diagnosis because of its impact on loved ones. One woman was "trying to get my children to forgive my boyfriend for infecting me." Withholding the diagnosis was also influenced by the desire to protect family members.

Another woman described the most difficult aspect of HIV

Diagnosis of HIV; only revealing it to a friend and not to my family . . .mainly because I do not want to cause them stress or worry; or to act differently towards me . . . whether with overwhelming attention and emotion or adverse reaction .

The desire to protect loved ones was shown in statements, such as " . . . the one thing that really is difficult is not wanting my family to see me when I really get sick.". Experiencing the emotional reactions, "watching my family suffer, wonder, and be sad; I very often
feel guilt." -

DISCUSSION

The stress of living with HIV was quantitatively measured by one of the scales of the clinical version of the Mastery of Stress Instrument (MSI) (Younger, 1993). On a scale of 10 to 50, the mean for this sample was 30.12 (SD=8.61, range: 10 to 50), higher than any published findings of other studies using the MSI. Balancing the intensity of the subjects' stress experience, the subjects reported a limited degree of mastery of stress (M=54.94, SD=9.59, range: 27 to 75). The women responded most positively to the MSI items dealing with certainty or mastery of meaning.

Issues related to disclosure and stigma permeated many of the women's comments. Feeling unable to share the diagnosis with friends and family members can lead to isolation and secrecy at a time when additional support is most needed (Giacquinta, 1989). Stigma has been negatively linked to life satisfaction among HIV-positive persons (Heckman, Somlai, Sikkema, Kelly, & Franzoi, 1997). Nurses must be aware of the interpersonal asp&ts of the women's fears and their implications for the health care environment.

A lack of compassion and sensitivity on the part of health care providers has been reported by women with HIV as a reason to delay or terminate care. Women with HIV are reluctant to seek health care because of potential discrimination and loss of confidentiality (ALRP, 1998). Although nurses in the field of mental health are no strangers to protecting patient privacy, a heightened commitment to confidentiality - is critical in creating a health care environment in which women with HIV will feel safe and accepted.

Diagnosis with HIV infection complicated the sexual and reproductive decisions of the women in the study. One woman described her fear of transmitting the infection to an HIV-negative partner as decreasing her desire for sexual activity. The vast majority of women in the world with HIV are of reproductive age (Minkoff, 1998). Scientists remain unsure of pregnancy's impact on HIV infection and what the best methods of treatment for the HIV infected expectant mother are. Such professional uncertainty only heightens the reproductive uncertainty experienced by the woman faced with the reality of mandatory testing and the possibilities of negative health care provider attitudes; and the likelihood of being unable to live until the unborn child is an adult.

The inability to work resulted in financial limitations that influenced decisions about health care and ways to meet basic needs. Being unable to work may limit the woman's health care options (ALRP, 1998) and access to social support (Sharts-Hopka, ReganKubinski, Lincoln, & Heverly, 1996).

Symptoms influenced quality of life and were viewed by the women as possible indicators of a progressing disease, eliciting distress and uncertainty. Folkman, Chesney, and ChristopherRichards (1994) found the unpredictable course of HIV infection and unexpected improvement in health among the factors contributing to depression in men with HIV Managing symptoms and seeking treatment have been described in other studies of persons with HIV infection as being "illness work" (Gaskin & Brown, 1992).

The women in the study were at different stages in their experiences with HIV infection. Reflecting the subjective nature of stress the women held contrasting views of the overall experience of living with HIV infection. One participant did not identify a specific stressful aspect, rather she described the stress as "very extremely, hard, difficult; basically, it sucks."

Another participant stated that dealing with the stressors was "very hard at times . . . I have my days." Others reflected on sources of strength: "Living with this infection has made me see the strength I have within and to know there is someone to love and care for me no matter what"; and "For a while I was thinking negative. But today, I can think positive."

CONCLUSION

Women in this study described the most difficult aspects of living with HIV infection. Glimpses of the reality and poignancy of the experience were contained .in their candid statements. These findings cannot be generalized to all HIV positive women because the nonrandom sample was relatively small and the data were primarily collected in urban areas. The methodology was further limited by the reliance on written responses. The methodology also prevented validating the meaning of the responses and the categories developed with the participants.

Despite these limitations, nurses working with HIV positive women can use these findings to initiate a focused psychosocial assessment. The nurse could share that other HIV positive women have described fears, limitations, symptoms, and emotions as being difficult aspects of living with the infection. The nurse could validate whether these were difficult for the woman, eliciting specific individualized concerns.

Interventions that focus on helping women identify and work through the stressors of fear of disclosure and premature death may serve to increase coping and quality of life. Assisting with access to resources to minimize limitations imposed by the disease is warranted. Just as imperative is the implementation of psychosocial and spiritual interventions to help the women deal with the intense emotions involved in living with the uncertainty of HIV Holistic, compassionate care can be facilitated by applying these findings

REFERENCES

AIDS Legal Referral Panel (1998). Barriers to health care for HIV positive women: Deadly denial. [On-line]. http://hivinsite.ucsf.edu/ social/misc -documents/2098.3e45.html. Andrews, S., Williams, A.B., & Neil, K. (1993).

The mother-child relationship in the HIV -1 positive family. Image, 25, 193-198. Centers for Disease Control and Prevention.
(1996). HIV/AIDS Surveillance Report, 8 (1).

Atlanta: U.S. Department of Health and Human Services. Centers for Disease Control and Prevention. (1997). Update: Trends in AIDS incidence, death, and prevalence--United States, 1996. Mortality ffi Morbidity Weekly Report, 46, 165173.

Farzadegan, H., Hoover, D.R., Astemborshi, J.,
Lyles, C.M., Margolick, J.B., Markham, R.B.,
Quinn, TC., & Vlahov, D. (1998). Sex differ
ences in HIV -1 viral load and progression
to
AIDS. [On-line]. Available: http:www.the
lancet.com/newlancet/regJissues/vo1352n
o913
9/body.early1510.htm1.

Folkman, S., Chesney, M.A., & ChristopherRichards, A. (1994). Stress and coping in caregiving partners of men with AIDS. Psychiatric Clinic of North America, 17, 35-53.

Gaskin, S., & Brown, K. (1992). Psychosocial responses among individuals with human immunodeficiency virus infection. Applied Nursing Research, 5, 111-121.

Giacquinta, B. (1989). Researching the effects of AIDS on families. American Journal of Hospice Care, 6, 31-36.

Heckman, TG., Somlai, A.M., Sikkema, K.J., Kelly, J.A., & Franzoi, S.L. (1997). Psychosocial predictors of life satisfaction among persons living with HIV infection and AIDS. Journal of Nurses in AIDS Care, 8, 21-30.

Krippendorff, K. (1980). Content analysis: An introduction to its methodology. Beverly Hills, CA: Sage Publications.

Lindlof, TR. (1995). Qualitative communication research methods . Thousand Oaks, CA: Sage Publications.

Melnick, S.L., Wertheimer, W .J., & Pinn, V W
(1995). Women and HIV/AIDS research in
the United States. Journal of the American
Medical Womems Association, 50 (3-4), 137
138.

Minkoff, H. (1998). Relationship of pregnancy to HIV disease. Immunology and Allergy Clinics of North America, 18, 329-344.

Ninth National Conference on Women and HIV Infection. (July/August, 1997). HIV Frontline 29, 1-3, 8.

Osmond, M.W, Wambach, K.G., Harrison, D.F, Byers, J., Levine, P, Imershhein, A., & Qttadagno, D.M. (1993). The multiple jeopardy of race, class, and gender for AIDS risk among women. Gender & Society, 7, 99-120.

Peng, T (1998). Human immunodeficiency virus infection in women. The Female Patient, 23, 51-56.

Shams-Hopka, ' N.C., Regan-Kubinski, M.J., Lincoln, PS., & Heverly, M.A. (1996). Problem-focused coping in HIV-infected mothers in relation to self-efficacy, uncertainty; social support, and psychological distress. Image, 28, 107-111.

U.S. Department of Health and Human Services. (1995). Hospital resource use by HIV-infected females. (AHCPR Publication No. 96-N001). Rockville, MD: Author.

Weber, R.P (1990). Basic content analysis (2nd ed.). Newbury Park, CA: Sage Publications.

Younger, J.B. (1993). Development and testing of the Mastery of Stress Instrument. Nursing Research, 42 (2), 68-73.

Dr. Gray is Assistant Professor, The University

of Texas at Arlington School of Nursing,

Arlington.

Supported by grants from the Center for
Nursing Research, The University of Texas at
Arlington School of Nursing and Delta Theta
Chapter, Sigma Theta Tau, International.
Appreciation for editorial assistance is

expressed to Dr. Carolyn Cason, Dr. Edith

Summerlin, Susan Brown-Chappell, and Kathy

Wright, colleagues at UTASN.

Address correspondence to Jennifer Gray,
PhD, RN, 6409 British Lane, Arlington, TX
76002.

KEYPOINTS

·         Eighty women described the most difficult aspects of living with HIV infection.  Content analysis revealed four themes: fear, limitation, symptoms, and emotions.

Fears related to disclosure and sigma were more frequently described than fears of dying.  Limitations were financial, sexual/reproductive, and physical.  The physical limitations were related to the presence of symptoms leading to a wide range of emotions.