The impact of disclosure of HIV on the index patient's self-defined family

For most people f'acing a serious illness, the family is regarded as the primary source of support. Research suggests that pattern of support may differ for people infected with HIV. Access to support normally requires disclosure of one's health problem to others. This study examined the impact of disclosure of HIV on the index patient's self-defined family. Most participants were gay men attending a London HIV clinic. Both they and the care-givers whom they identified to the researchers were interviewed. The results of this qualitative study highlight the fact that many gay men with HIV do not regard their biological family as their primary social support system. Friends and partners were commonly cited as primary care-givers. Most of those interviewed who provided support to the infected individual clearly remembered the disclosure event. They also had a number of emotional reactions, over time, to disclosure. We argue that adjustment to illness among care-givers is a complex two-way, reciprocal process whereby the infected individual and care-giver take subtle cues from one another in terms of how they appear to one another to cope. Some emotionally painful feelings may he experienced but not openly expressed. Therapists who work with families affected by illness should first learn from the patient who he or she defines its 'family'. They should also enquire about the impact of disclosure of illness on all care-givers as well as subsequent reactions and unexpressed feelings associated with this.