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Most Women With HIV Do Not Discuss Fears, Pregnancy Issues With Their Clinicians

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Published: May 27, 2011 4:13 pm
Most Women With HIV Do Not Discuss Fears, Pregnancy Issues With Their Clinicians

Results from a study published this week indicate that many women with HIV never discuss issues specific to HIV-positive women during visits with their clinicians, particularly issues relating to HIV management prior to or during pregnancy.

The researchers speculated that gender-based issues were not discussed during visits with the women’s health care providers because clinicians had a lack of experience, comfort, or knowledge of these issues or expected that patients’ concerns would be attended to by other physicians.

“Clinicians caring for HIV-infected women need to incorporate regular discussions about the reproductive plans of their patients. These plans change over time and clinicians need to modify their recommendations and treatment strategies accordingly,” said Dr. Kathleen Squires, a physician at Jefferson Medical College of Thomas Jefferson University in Philadelphia and lead author of the study.

“The study suggested that there is substantial room for improvement to reach this goal,” she added.

Based on their results, the study authors recommended that practitioners discuss issues such as family and pregnancy planning with HIV-positive patients. They also recommended that clinicians discuss other treatment-related psychological, social, and emotional aspects of HIV and offer routine screening for depression and other problems.

The proportion of women with HIV in the United States has increased over the past two decades. As of 2006, women comprised about one quarter of the HIV-positive population in the U.S.

According to the study authors, HIV-positive women face a unique set of health, social, and psychological problems. HIV and antiretroviral therapy may affect women differently than men. Also, rates of depression tend to be higher among HIV-positive women compared with HIV-positive men.

In addition, the use of highly active antiretroviral therapy during pregnancy, together with use of caesarean sections and avoidance of breast-feeding, have reduced rates of mother-to-child HIV transmission in the U.S. to less than 2 percent. As a result, more women with HIV may consider pregnancy and childbirth.

However, there is little information available on the effectiveness with which medical providers address potential pregnancy in women with HIV, and few studies have examined the gender-specific health needs of women with HIV.

In this study, researchers conducted a survey with 700 HIV-positive women to get feedback about communication barriers with their health care providers. Participants were recruited from 29 AIDS information, counseling, and treatment centers across the U.S.

Participants had a median age of 42.5 years and had been receiving antiretroviral therapy for an average of eight years. Two hundred of the women were Caucasian, 200 were Hispanic, and 300 were African-American.

Concerns About Gender, Racial Differences In HIV Progression And Treatment

More than half of the women (55 percent) had never discussed gender-based differences in treatment response with their practitioners, even though 46 percent of the women thought their disease affected them differently than men. Caucasian and African-American women were least likely to have discussed this issue with their HIV health care providers. Also, women with male health care providers were less likely than women with female health care providers to have discussed this topic (41 percent versus 51 percent, respectively).

However, 96 percent of women who did discuss gender-based differences in treatment response with their practitioners were satisfied with the answers they received.

More than half of the women (59 percent) felt that their culture, ethnicity, or language affected the care they received. Hispanic and African-American women were more likely to report this issue than Caucasian women. Also, women in the South were more likely to report this issue than women in the West or Northeast.

About one third of the women had seen three or more providers since starting HIV treatment, and 43 percent said they had changed providers because of communication issues.

Childbearing And Caregiver Issues

More than a third of the women (39 percent) had children. Of the women who had been pregnant prior to the survey or who were considering pregnancy, nearly half (48 percent) were never asked by their health care providers if they had or were thinking about having children. More than half (57 percent) had not talked about treatment options with their practitioners before becoming pregnant.

Of the women who were pregnant or had been pregnant at the time of the survey, 42 percent were either “not very aware” or “not at all aware” of the treatment options available to pregnant women with HIV.

Overall, 61 percent of women felt they could have children if given appropriate medical care but 59 percent felt society strongly discourages them from doing so.

Women with HIV who lived in the South were more likely to feel society discouraged them from having children than those living in the Northeast or Midwest. Those who received care from a nurse practitioner or physician assistant were also less likely to experience this attitude than those treated by infectious disease specialists or general practitioners.

Fifty-two percent of the women identified themselves as caregivers, and 43 percent said living with HIV has made it harder for them to look after their families. More women in the South compared with the Northeast felt this way (50 percent versus 37 percent, respectively).

The researchers speculated that concerns about stigma may encourage women with HIV, especially those who are caregivers, to keep their HIV status confidential as long as possible and hesitate to seek early care.

Social Support And Depression

Most women in the survey thought factors such as suppressing viral load (amount of HIV in the blood), achieving long-term success with medications, and being able to live normal lives were important aspects of their treatment.

Women who wanted extra support beyond what their practitioners could provide found it through support groups, therapists, family, and friends. Most Caucasian women identified therapists as sources of additional support, while Hispanic and African-American women mostly identified support groups.

Women in the Midwest and Northeast were more likely to get extra support from a support group or therapist, while women in the South were more likely to get support from family and friends.

Seventy-three percent of women said they had struggled “a great deal” or “somewhat” in managing their daily lives, while one third of the women experienced changes in sleep patterns, loss of energy, unexplained aches or pains, feelings of sadness or worry, and anxiety.

In addition, 27 percent had five or more feelings commonly associated with depression, although other studies have reported higher rates of depression among HIV-positive women.

A majority of the women (58 percent) said they were comfortable talking to their providers about their depression-related feelings, but women in the South were less likely to feel comfortable than women in the rest of the country.

For more information, please see the study in AIDS Patient Care and STDs.

Photo by mrhayata on Flickr – some rights reserved.
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