Despite fears of shame and stigma, most HIV-positive men choose to confide their health status to their mothers, according to a new University of Florida study. When deciding whether to tell, the men’s need for their mothers’ emotional and socioeconomic support outweighed those fears, researchers found.
Though disclosure can be an important first step toward managing the illness, adults with the disease may be reluctant to tell their loved ones, said Connie Shehan, a UF sociologist and the lead author on the study, which appears in the current issue of the journal Family Relations and was funded by the Department of Veterans Affairs.
“People who have HIV or AIDS often are pessimistic about what response they’ll get – they underestimate the extent to which their loved ones will come forward and provide support,” Shehan said. “But we found that the majority of those who told felt that their mothers responded in a really helpful and supportive way.”
Mothers are often the main source of support for HIV-positive children, said Connie Uphold, a research health scientist at the Malcom Randall Veterans Affairs Medical Center’s HIV clinic and a co-author on the study. Uphold, a nurse, has examined nursing’s influence on the psychosocial factors —such as depression, health-care behavior and family relationships — associated with HIV disease progression. Her previous work included comparing older and younger patients with HIV to see how differences in viral loads, T-cell counts and other physiological measures related to their reported quality of life.
“Many times, we heard how important their mothers were in their lives for a variety of reasons,” Uphold said. “Mothers were the first family members that people would turn to. We wanted to explore that mother-son relationship a little more.”
The researchers interviewed 166 HIV-positive men from a mix of racial and socioeconomic backgrounds. On average they were 44 years old, but their ages ranged from 20 to 70. During the interviews, participants described whether they had confided their health status to their mothers, how they had likely been exposed to HIV, and evaluated variables such as need for support and perception of acceptance by their families.
Seventy-five percent of the men in the study chose to disclose their health status to their mothers. In making that decision, the participants weighed many factors, including how they contracted the disease, how far the disease had progressed and their own age and education level.
Men who contracted the virus through homosexual contact were much more likely to confide in their mothers than men exposed through heterosexual contact, blood transfusion or drug use, researchers found. Additionally, men who suffered more severe and frequent symptoms were more likely to tell, possibly because of an increased need for support, Uphold said. Men with more education were less likely to disclose than men with little education, but that may be an economic effect, she added.
“When you’re more highly educated, you’re likely to have better resources, better coping skills, maybe better income,” she said. “So you might not need the support of your mother as much.”
Age also mattered – older men were much less likely to tell their mothers, possibly because the mothers were themselves older and the men were concerned for their well-being, Shehan said.
However, for participants who do confide, new treatments that prolong the life of patients with HIV and AIDS can allow for a more reciprocal relationship with mothers who may be approaching their golden years, Shehan said.
“It’s a chronic disease now, people live with it for a long time,” she said. “The men feel that their mothers’ primary role is providing emotional support – helping them get through the day, listening to them talk about their concerns. And the men help their mothers with other problems – fixing their car, doing yard work. So there’s this exchange going on.”
“What’s unique about this study is that there’s a very clear focus on targeting mothers, and that’s groundbreaking,” said Jill Bermann, a research nurse scientist in the VA San Diego Healthcare System.
Previous research has shown that confiding in family and friends can help HIV-positive patients feel less depressed and have a better quality of life, Uphold said. The researchers hope this study will prompt clinicians and therapists to encourage HIV-positive men to form a support network earlier in the course of the disease, before they become very sick.
“This (study) can show people that although it’s stressful to disclose to somebody, the majority of people that did disclose to their mothers felt that it was a positive experience,” Uphold said. “People were able to talk more freely, to get and exchange support more easily, and didn’t have to hide their disease.”
Bermann agreed. “The overall general literature in HIV is that people who do not disclose tend to be more avoidant, more depressed, and more anxious,” she said. However, though the results of the study are heartening, clinicians should be careful to let the patient make the ultimate decision about whether to disclose, she cautioned.
“It’s still a delicate issue. Providers shouldn’t encourage people to disclose before they’re ready,” she said.