3.4 Sharing of HIV test result with family and friends

Sharing HIV status is not only important in enabling people to receive emotional support from family and friends and help in future decision-making, it also reflects people’s ability to understand and accept their HIV status. Rates of disclosure to partners and family/friends vary considerably, but in many studies (particularly from developing countries) people have found it easier to discuss their HIV status with a close friend or family member than with their partner.

Benefits from disclosure

Disclosure of one’s HIV status increases both practical and emotional support for those who test seropositive (Holt et al., 1998¹³³).

Developing countries

People who tested seropositive from general VCT services in the United Republic of Tanzania shared their HIV test results with a “significant other” of the same sex. Those who were married or cohabiting did not choose their partner. The significant other was usually chosen among close family members, usually from the same generation as the patient (Lie and Biswalo, 1996¹³⁴).

Similar findings were apparent from the Ugandan TASO/WHO evaluation (TASO/WHO, 1993-1994¹³⁵). After counselling the majority of people (90.4%) were able to reveal their HIV serostatus to close relatives. In that same evaluation, 85.3% reported revealing their HIV status to relatives other than household members and 67% revealed their status to household members. Only 36% revealed their status to spouses or regular sexual partners. This suggests that emotional support is sought over a broader family and community network.

When the VCT service was first set up in Zambia, people found it difficult to share results, especially immediately following testing (Kelly et al., 1994). A later evaluation from the same site showed that most people were able to share their HIV status with someone (Baggaley et al., 1998). However, women in particular said it was shameful to have HIV and, if they were known to be seropositive, they worried they would be discriminated against, and were particularly reluctant to tell their partner.

In a study from Uganda, 22 families with 1 or more adult members with HIV were interviewed about their responses to HIV and stigma (McGrath et al., 1993¹³⁶). Approximately half of the PLHA interviewed said that they had not informed any of their family. They said that they feared their family would worry or would not understand. Some said that they feared rejection if their families knew of their positive status. Family members who were informed said that they were shocked or feared the loss of their relative with HIV. However, none rejected him/her or feared infection because of day-to-day contact.

Industrialized countries

A small study from the United States showed that when women from San Francisco were questioned following antenatal VCT many had not disclosed their HIV status to any friends (65%) or family members (25%). Many worried about being abandoned or rejected by loved ones if their seropositive status were known. They cited lack of public understanding about HIV infection as being an important factor, and taboos about HIV infection, especially in relation to women (Lester et al., 1995¹³⁷). Despite not sharing their HIV status with family and friends, seropositive women said that they did receive good emotional support from them.

A study from London also revealed that people were more likely to share their test result when they had symptomatic HIV disease or needed treatment and that disclosure enabled people to obtain additional support (Miller et al., 1998¹³⁸).

(For further discussion of disclosure see Section 6 on “Negative outcomes following VCT”).

Family counselling

Where families can be involved in counselling this can be of great benefit in helping the person with HIV be more accepted and supported by his/her family (Lippmannet al., 1993¹³⁹). Aproject from the Ukraine has demonstrated that by involving the families of people with HIV they were better able to accept and understand the problems of their HIV family member and to help that member cope following coun-selling (Pidlisna et al., 1998¹⁴⁰).

In Chaing Mai, Thailand it has been proposed that post-test counselling should be carried out in a family setting to facilitate disclosure and hence long-term support and normalization. Preliminary investigation has shown that this may be a feasible option (Srirak et al., 2000¹⁴¹).