HIV-positive women in the US have high rates of disclosure to family members

HIV-positive women are more likely to disclose their HIV infection status to female rather than male family members, according to US research published in the December 2007 edition of AIDS Patient Care and STDs.

The research also found that disclosure to family members tended to occur in the first seven years following HIV diagnosis and then levelled off. The likelihood of disclosure to family members was not significantly affected by factors such as HIV disease progression or the proximity of family members.

Traditionally HIV in the US has been regarded as a disease of young men. But this is gradually changing. In 2005 approximately 30% of new HIV diagnoses were in women. The majority of these women were from minority groups.

Many HIV-positive individuals worry about the reaction of people to whom they disclose their HIV status. Partners, family members, friends and networks in the wider community can provide support and emotional security, but this can be undermined by the stigma that surrounds HIV.

It is therefore possible that fear of stigma means that HIV-positive women do not disclose their HIV status to family members. But research about disclosure has tended to focus on disclosure to sexual partners.

Research that has looked at disclosure to family members suggests that most disclosure occurs in the first year or so after diagnosis with HIV. However, other research shows that HIV disease progression is an important determinant of disclosure with more family members being told about an individual’s HIV infection as the severity of HIV disease worsens. But much of this research was conducted before the introduction of effective antiretroviral therapy and may no longer be applicable.

Therefore researchers in the US state of Ohio designed a study to see when women were telling family members of their HIV infection and the extent to which disease progression, family network characteristics and participant characteristics affected disclosure.

A total of 125 women were recruited to the study. But the investigators restricted their analysis to the 117 women who reported family members (defined as mother, father, sisters or brothers). Recruitment to the study was between 2001 and 2004. Individuals were interviewed and completed questionnaires every six months for three years.

A significant number of women reported having no partner (49%), ages ranged between 18 and 63 years, the duration of HIV infection ranged between one and 19 years, 88% contracted HIV through sex and 78% were unemployed.

A total of 339 family members were mentioned by the patients and 84% of these had been disclosed to. This included 86% of mothers, 74% of fathers, 90% of sisters and 80% of brothers.

Answers to the investigators showed that the women disclosed to a significant number of family members in the first six months following their HIV diagnosis. In this period 67% of mothers were told, 44% of fathers, 62% of sisters and 50% of brothers. The mean time of disclosure to mothers was 31 months, 27 months for sisters, 78 months for fathers and 53 months for brothers. The number of family members to whom patients disclosed steadily increased during the first seven years following HIV diagnosis and then leveled off.

Unlike earlier research, the investigators found that HIV disease progression did not affect the likelihood of diagnosis. Neither the duration of diagnosis nor diagnosis before or after the introduction of effective anti-HIV therapy significantly affected the likelihood of disclosure.

Nor did race, satisfaction with family relationships or the proximity of family members affect the chances of disclosure. Individual patients were 62% more likely to tell other family members of their HIV status if they had told at least one other family member of their HIV status.

The investigators conclude “the results of this study suggest that women are most likely to disclose their HIV status within the first seven years after diagnosis and that their female family members are the most likely targets of disclosure. Interventions that are specifically targeted to women may need to be developed in order to address the obvious gender differences present in patterns of disclosure to family members.”