MOTIVOS DIRECTRICES EN LA DELINEACION DE LOS CUESTIONARIOS DE 1953

The above quote suggests that Phil unsuccessfully tried to avoid disclosure. He might have wanted to conceal his status but was pressurized by the nurse and obliged to give the information in order to access dental services. Phil said he had faced a similar dilemma before and was convinced he could not access dental services without sacrificing his confidentiality. Legally, it is not mandatory to disclose one’s HIV status to a dentist in the UK. However, it is recommended that people living with HIV inform their dentist of their HIV status because of the potential risk of an adverse drug reaction, and to prevent any risk of onward transmission.

This subsection has illustrated that disclosure of HIV-positive status is an important gateway to healthcare services. However the discussion also highlights the risk of rejection and stigmatization which can result from disclosure even to health professionals. The next subsection analyses disclosure to other people living with HIV.

3.2.2 Disclosure to HIV-positive peers

Sixteen of the 18 study participants were members of various HIV support groups through which they were able to socialize with and get support from other HIV-positive individuals. Two participants had never joined an HIV support group. One of them was an HIV-negative man in a sero-discordant relationship, and therefore had no need to join an HIV support group. The second had confidentiality concerns regarding support groups within her locality, as further discussed below. The groups brought together HIV-positive peers who met regularly to share their experiences of dealing with the various everyday challenges of living with HIV, such as medication adherence and sexual relationships. Attending an HIV support group implied

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disclosure of HIV-positive status by default, and more or less guaranteed that disclosure recipients would also have the condition or, if HIV-negative, be sympathetic to people who carried the infection. Being in London, with many well-resourced HIV support organizations, the participants had a choice of groups to join, giving them the opportunity to reveal their condition only at the services most relevant to their needs. But some of the participants remained wary of the perceived risk of exposure by virtue of membership of such groups and avoided certain services with which they associated a higher risk of exposure.

During the interviews, all of the participants were asked about who, as far as they were aware, knew they were living with HIV; and who had informed these individuals of their condition. The aim was to establish who, other than healthcare professionals, had been told by participants that they were living with HIV; and to determine any pattern regarding disclosure recipients. As already indicated, 16 HIV-positive participants, (11 men and 5 women) had disclosed their condition through association with support groups. The couple quoted below said they met at an HIV support group and subsequently married. They were interviewed together at home because concerns about confidentiality meant that they were not comfortable about being interviewed separately.

Interviewer: And meeting there [at the support group] meant you knew your status and she knew your status or you discussed it again later?

Bill: Of course she told me.

Rachel: I think meeting there is a guarantee, at such a party. Yea.

Bill: It is a guarantee because most people who are meeting there, you have to be positive. Yea. So, that is how I met her.

(Bill, 31 years old, HIV-positive for 7 years. Has partner, Rachel living with him in London, 37 years old, HIV-positive for 8 years. Bill an 18 months old son. The child is known to be HIV- negative)

Bill and Rachel said they met at a party organised by a London-based community organization for HIV-positive people. Although Rachel added that she later reiterated to Bill that she was HIV-infected, Bill noted that Rachel’s status was obvious to him. Such ‘automatic’ disclosure through presence at an HIV support group is further illustrated below.

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Interviewer: And talking about status, how did you come to know that your current partner has HIV?

Lorna: My partner? My husband? … My boyfriend?

Interviewer: Yes

Lorna: We met in the support group. HIV support group. I think everyone who is in support group has to be HIV.

(Lorna, 52 years old, HIV-positive for 11 years. Has a partner, Damien who lives independently from her in London, 54 years old, HIV-positive for 7 years.

Damien has 4 children from his previous marriage living in country of origin, previous partner died of AIDS related illness in country of origin. Damien’s 10 year old son who lives in country of origin and Lorna’s 13 years old son who lives in London are known to be HIV-positive)

The above extracts imply that disclosure by default was a key factor for participants in joining a support group, and that they valued being able to reveal their HIV-positive status in this way. Although some participants felt that support groups did not necessarily guarantee confidentiality, as will be illustrated below, the groups brought together peers more likely to respect one another’s confidentiality, thereby minimizing the risk of unwanted exposure. Interviews with service providers emphasised that they strove to ensure that support groups adhered to high standards of confidentiality.

However, for some of the participants, the composition of some of the support groups was a barrier to accessing them. Melisa, one of the six female participants, had never joined a support group within her locality because she did not believe that her confidentiality would be guaranteed there. However, she did indicate willingness to join an HIV-support group away from her neighbourhood, such as West London.

Although Melisa’s approach exemplifies concealment, which will be discussed in depth in Chapter 4, her case is relevant to this subsection because it suggests that even those living with HIV might expose the status their HIV-positive peers.

Interviewer: Do you attend any support groups?

Melisa: No ... because … In East London I can’t go there because East London people they are all from my country, so I can’t go where my country mates are … But if it on this side I can come this side [meaning West London]

because I know nobody knows me this way … So if I go and talk about my

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status they will talk all about it [in East London]. So everybody will be knowing it. Which I don't want.

(Melisa, 43 years old, HIV-positive for 13 years, has adult daughter.

Separated from partner, Biden, 43 years old, HIV-positive for 11 years, has no child. Biden and Melisa still visit each other. Melisa’s 13 year old son is known to have died of AIDS related illness in the UK)

As already illustrated, becoming a member of a support group entails HIV-positive status disclosure to other group members who might divulge this information to others, a risk which Melisa was not prepared to take. Her concern about disclosure at a support group leading to a risk of exposure was location-specific. She indicated that she was willing to join support groups in West London because she believed she would not be recognized by people in that area, hence raising fewer confidentiality concerns.

The next subsection discusses disclosure to family members.