Eleanor Goldman

AIDS and children: Some of the issues in haemophilia care and how to address them

Haemophilia is a life-long, life-threatening inherited condition for which there is treatment but no cure. It affects not only the patient but all members of the family. This paper focuses on how AIDS/HIV, which shares these characteristics with haemophilia, has affected children with HIV, their siblings, those who have remained antibody negative and those with HIV infected fathers. The impact of haemophilia and AIDS on the family is considered and the ripple effect of AIDS on health care staff is addressed.

A family with HIV and haemophilia

An Indian Sikh family affected with both HIV and haemophilia is described. The use of interpreters; the regular follow-up in the Concorde trial; family therapy and help with practical problems have been approaches used to help the family despite language and cultural differences.

The impact of AIDS/HIV on the family: Themes emerging from family interviews

Abstract AIDS/HIV can place considerable stress on family relationships. Family interviews with those affected by AIDS have been conducted at the Royal Free Hospital, London, since 1983. The themes that commonly emerge from these interviews relate to: i. facing up to bss and death in a climate where there is social stigma towards infected individuals and their families; ii. stress related to changes in the structure of the family; Hi. multiple and complex problems that continue even after someone has died; and, iv. problems at the interface between the family and other systems, such as health professionals and other carers. The family therapists role in relation to these is briefly described.

Counselling children and adults about AIDS/HIV: The ripple effect on haemophilia care settings

Abstract Haemophilia and HIV/AIDS are life-long, life-threatening conditions for which there is treatment but no cure. Both affect not only the patient but all members of the family. This paper focusses on how the counselling of those with AIDS/HIV has been affected by dilemmas such as treatment, infectious aspects, blood donation, sex, the media and having children. The impact of haemophilia and AIDS on the family and the ripple effect on health care staff is addressed.

Systemic theory in counselling people with HIV disease

Since HIV disease became a pressing medical and social problem over a decade ago, there have been significant advances in the care and treatment of those who have been infected with the virus. Psychological counselling is a cornerstone of some programmes designed to provide support and care. The emphasis has been on preventing the spread of HIV infection, obtaining informed consent for an HIV test and psychological support in counselling. This paper addresses the provision of psychological support for people with HIV disease in the context of a systemic theoretical framework.

Treatment dilemmas for HIV infected haemophiliacs

A description of a structured group, held for anti-HIV positive haemophiliacs and their relatives, to discuss the implications of participating in the MRC/INSERM double-blind control trial of zidovudine is given. The group discussion is used to define, evaluate and rank the many treatment dilemmas inherent in participating in this drug trial.

Value of Dna Analysis with Multiple Dna Probes for the Detection of Hemophilia a Carriers

Detection of hemophilia carriers is an important issue and should be addressed with great care. The allelic frequencies of three intragenic probes (Bcl I for probe p114.12, Xba I for probe p482.6, and Bgl I for probe C) and one linked probe (Bgl II for probe DX 13) are reported, together with their diagnostic yield singly and in combination. In this series, 725 individuals (405 females) in 156 families were analyzed for restriction fragment-length polymorphisms. A total of 255 females (63%) were found to be informative for their carrier state with one or more probes. The most informative intragenic probe was p482.6 (useful in 49% of informative females). The most informative probe was DX 13 (useful in 59% of informative females), but this is a linked probe that carries a 5% risk of cross-over. By the use of probes p114.12, p482.6, and DX 13, almost 98% of all the informative females could be detected. In about 71% of families with a family history and a known carrier, prenatal diagnosis was feasible.