A family with HIV and haemophilia
Goldman, E.; Miller, R.; Lee, C.A.
Aids Care 5(1): 79-85
1993
ISSN/ISBN: 0954-0121 PMID: 8461364 DOI: 10.1080/09540129308258586Document Number: 333886
Hemophilia is a life-long bleeding disorder carried by females and passed on to their male offspring which consists of spontaneous internal hemorrhages. Treatment is by prompt intravenous infusion of the missing factor, derived from pooled donations of blood. Patients are eventually taught how to treat themselves. Hemophilia not only affects the afflicted individual, but also his immediate and wider family. Mothers may suffer guilt at having passed hemophilia on to their sons, siblings resent the extra attention afforded to the affected boy and sometimes feel guilty that they have not been afflicted, and fathers may share their wives' feelings and be either supportive, angry, or resentful. Marriages suffer, while sisters and other female relatives are potential carriers who must be investigated and counseled before deciding about childbirth. Moreover, spontaneous hemorrhages can happen at any time, so a great deal of uncertainty is introduced into family life. Being a carrier or suffering from hemophilia also adds to the difficulties of making relationships, especially in cultures where marriages are arranged. Hemophilia in the UK is treated at special centers where comprehensive care is offered to the patient and his family; a multidisciplinary team of doctors, nurses, and a senior medical social worker are available, with referrals to other specialists made as needed. In light of the potential presence of HIV in the supply of donated blood, all patients at the Royal Free Hemophilia Center were counseled about the possibility of receiving contaminated blood supply from 1983 onwards and advised to practice safer sex. The authors describe the case of an Indian Sikh family from the Punjab living in the UK coping with hemophilia and HIV infection in it's two sons and one daughter-in-law. The extended family of father, son, siblings, in-laws, and offspring lived in the same house for the majority of the time of observation. Marriages for the two sons had been arranged without disclosure of their hemophilic status. The wives were therefore long unaware that their husbands are hemophilic, while the men had no knowledge of HIV and had not understood what had been previously told them at their local hospital. This family received, with the help of interpreters, regular follow-up in the Concorde trial, therapy, and help with practical problems. Such systemic counseling seems to have been effective in this cross-cultural setting in addressing both HIV and other family problems.