Counselling patients with AIDS-associated Kaposi's sarcoma

Kaposi's Sarcoma is a disfiguring and feared symptom of HIV disease. Structured interviews of patients, family members and health care providers were conducted in three settings: USA (11), UK (8) and sub-Saharan Africa (20). These sought to identify: (a) contextual and cultural differences; (b) the main fears of patients and others; (c) practical ways of addressing these and coping with stigma, and (d) methods for ‘inoculating’ non-KS patients against psychological distress before there is any evidence of clinical signs or symptoms. It was found that context and culture mediated social responses to KS and disfigurement. Patients in Africa seemed to be less affected than Western patients by appearance and stigma. Issues relating to secrecy were common to both groups. Compliance with treatment was good as long as it was efficacious. When no further treatment of Kaposi's sarcoma was possible, there is greater emphasis on counselling. Patients (particularly in the West) appreciated treatment of lesions on the hands and face, and advice about cosmetic applications, even if lesions on other parts of the body could not be treated. Perceptions about being able to find a new partner were reduced among Western patients with KS. Patients with KS or an associated fear may benefit from counselling in which ideas relating to stigma, secrecy, treatment, cosmetic applications, the effects on family and fears of disfigurement are discussed.